Tuesday, August 30, 2011

Sheppard's story

As told by his mother Marlo.



I've always been afraid of hospitals. I hate needles. Nothing terrified me more than the idea of childbirth. My husband is the same way. But when I got pregnant in May of '09, after my first OB appointment and nifty ultrasound, we resigned ourselves to the idea that we would wind up at the hospital when the time came for me to deliver.

On my 2nd OB appointment, she asked me, "So are you interested in going all-natural? It made me feel better to think that a doctor was basically telling me that I could do it without all the scary stuff. My mom, an RN, had already scared me shitless about the whole process and I was filled with dread.

In my hormonal anxiety, I started "researching" natural childbirth. I watched the Business of Being Born with my sister-in-law and decided that it would be fine for me to go with a midwife since my doctor told me I was "healthy enough" that I should be able to "go all natural." That movie and all my internet reading suggested that home birth was a perfectly safe thing to do for healthy, low-risk women like me. My husband was on board, too.

The first group of midwives I hired were all about homeopathy, strange diet changes, and harping on people about their weight. They stressed me out tremendously, but I stayed with them because they understood the importance of all the prenatal tests, and I was able to go to the DLO (diagnostics laboratory of Oklahoma) to get all my testing done and paid for by insurance, and a local OB (who I found out later is quite quack-tastic and pretty shady) allowed these midwives' clients to come and do their ultrasounds at his office.

The midwives themselves, however, being CPMs, were not covered by insurance. They offered me a "discount" for paying in full before 35 weeks. The total fee after discount was about $2000. And in the end, I decided to change to a different midwifery practice because these CPMs were just too intense and I was having doubts... but of course, I wasn't refunded any money.



So long about 34 weeks, I hired my final set of midwives. I was in love with them-- every time I went, they told me I was beautiful. They seemed so knowledgeable, and had a huge library of books on natural birth, spirituality, and other topics which seemed interesting to me at the time. I was comforted by knowing that the lead CPM (her assistant was a DEM) had been in business for over 20 years. I figured she must have seen it all. They told me that they only had to transfer 5 or 6 women a year, so surely I wouldn't need to transfer, and the hospital they transport to was nearby and they claimed that they had a "good relationship" with the doctors and CNMs there. I still had no idea just how different CPMs and CNMs really were, and I had no idea that they were lying about having a working relationship with this hospital.

At 40 weeks and 3 days, I went into labor. I stayed in labor-- very irregular, very painful-- for a total of 3 days. The CPM never showed up, and instead, I was stuck with the DEM, who only showed up after I'd been in labor for 24+ hours (of course they said that it's fine to labor as long as it takes, because "your body knows what to do."). My doula had come in and out my house periodically the whole time, but she wasn't giving us any advice...

The DEM thought that I needed a rest at about the 30 hour mark (my hubby's estimate-- I was living out of time as we know it at this point...). She suggested that taking a benadryl would help me nap, and a drink would relax the uterine muscles and make the contractions space farther apart and lessen in severity. My husband didn't know any better, and despite my doubts, I took a benadryl with a chaser of TGI Friday's mudslide mix.

The contractions slowed all right, but I couldn't sleep. And very soon they picked back up with a vengeance. I spent hours on our pull-out sofa bed in the living room, vomiting, retching, curled up head-down butt-up because that was the only way I had any bit of relief... I tried to meditate on the Hawaiian music that we had playing on the stereo. I tried to think of our last trip to Hawaii where I decided that this music was what I wanted to hear during labor, since it was so relaxing...

My doula finally suggested the next morning that I get into the pool of warm water because I was completely distraught and she thought that it might alleviate the pressure just long enough to make some decisions about how to proceed. It had been about 48 hours, the DEM checked me and I was only at 1cm and change, but I was 60 or so percent effaced. Something was wrong, but she dismissed it at the time. I was delirious; neither my husband or I had slept (the DEM had taken a nice nap on our couch, however!). The DEM cavalierly said, "I had a 40 hour labor with my last child. It sucked, but you just have to get through it. The only way out is through. This is what gets your baby out."

I will never forget that as long as I live, how dismissive she was about my pain, fear, and exhaustion. I sobbed as I sat in the water, wearing only a tank top. My doula rubbed my shoulders, and began to explain to me how epidurals work, giving me the courage to shout, "I NEED HELP!!!!!!!!" and giving my husband the nerve to say, "We need to GO." The DEM agreed, reluctantly, and despite her promise to drive us there herself, she decided she needed to stop at her house first and had us drive ourselves.

When we got to the ER, the attending doctor was very brusque with me, slapping me on the back in the middle of a contraction and saying, "You're not in labor-- these are pregnancy symptoms. Get used to it." The MW came in with us, but she said nothing. She handed over my "records" which of course made no sense to a real medical professional.

The resident doctors knew something was wrong, they lobbied for me to be admitted for augmentation for failure to progress, they saw I was exhausted... but since my BP and heartrate, and Sheppard's heartrate, were stable, their protests fell on deaf ears with the attending. He discharged me and gave me Ambien.

We had to go back home, I took the Ambien the doctor gave me, tried to sleep... my water broke full of meconium. Back to the hospital we raced. I got an epidural in record time and was allowed to sleep since our vital signs were stable. The resident Family Medicine doc who would later deliver Sheppard assured me that most kids with meconium just have to be observed for a few days in the NICU, and that since we were stable, he wasn't too worried. I labored for 12 more hours, but was able to sleep and regain some strength from IV hydration and electrolytes. Then it was go time...

1. Jeremy called the DEM who came back when I reached 9cm, and was there through the delivery (30 min. of pushing).

2. Sheppard came out, they laid him on my chest for a moment-- he was beautiful, and smiled up at me. Then the neonatology/pediatrics team gently picked him up and said to me, "we need to help him now..."

3. Despite my skin/muscles being in great condition, I suffered a 4th degree perineal tear and a small cervical laceration. The attending doctor, an unflappable surgeon, was flapped-- he scrubbed in fast as lightning and shoved the resident who'd delivered me aside in order to commence what would become a 2.5 hour long repair. I was in the hospital for 6 days, got infected, all kinds of stuff... then I was so weak I couldn't walk for 2 weeks, I couldn't go see Shep for a week and couldn't hold him for 2 weeks... the doctor who did my repairs later apologized for not giving me a blood transfusion b/c I had lost so much blood...

4. Sheppard was taken to the NICU, but rather than being observed for a few days, he suffered there for a month. One of his lungs collapsed, necessitating a chest tube, he went into PPHN necessitating countless heart echos to monitor the wonky valve, he had: chest tube, UAC, UVC, PICC line, IV antibiotics/antivirals/nutrition/fentanyl and sildenafil ("viagra"), oxygen and NO2, and he was on a ventilator for 2 weeks.



Still, he had the strength to roll a bit to the side whenever we came into his room-- he recognized my voice and wanted me to pat his bottom and rub his back like I did when he was in my tummy (he'd press his little bum against my belly to have it patted!). He was given a 50/50 chance.

His doctors were amazing, though, and made us feel like he was a top priority for them. His nurses were wonderful. They sent every clergy-person (from every faith!!!) to our room to pray for Sheppard and sit with us. I will never forget the words of Dr. W the neonatologist-- "These little ones can turn on a dime. They can bounce back from almost anything, so please don't give in to despair-- there is every reason to hope. None of them blamed us at all for what happened.

We had Sheppard baptised and he had the Annointing of the Sick.

5. my parents blamed us for the whole thing, causing another layer of pain and drama... it didn't help that the ER doc that saw me on the first trip there was skulking around my room and telling them things like, "if these girls wouldn't try this homebirth stuff and work with midwives, these things just wouldn't happen... they bring it on themselves..."

6. The midwives didn't check on us



7. Sheppard had to take Viagra for 4 months, visits to the cardiologist, ended up back in the hospital for observation, had chest retractions for 3 months from breathing trouble, and now has a nebulizer and has to take Synagis shots during RSV season...

8. I realized more and more that the cascade of catastrophe began with the failure of the midwives to recognize that something wasn't right in labor, failure to consider the estimated size of my son from the ultrasound I had at 34 weeks, failure to get me help sooner... the DEM had the nerve to say to me, when I went to them a few months later to talk about what all happened, she said, "Hopefully next time you'll trust birth more, and it will go easier." UGH!

9. Recently I wrote a FB email to the CPM who never showed up, and she wrote me back an ugly series of notes accusing me of slander, harassment, of being crazy and "changing the story in your mind," and saying she would take legal action against me if I "continued to slander" because she would "defend" her "reputation of safety."

10. I was diagnosed with PTSD over everything that happened (flashbacks, physically feeling baby kicks and labor pains, random unexplained anger, paranoia, nightmares, intrusive thoughts of the labor & birth & mistreatment from my parents...)

11. I'm pretty sure that my husband became clinically depressed, although he refused treatment

12. I'm SO GRATEFUL to our amazing medical team, to my husband who stood by me, to Dr. Amy and all of you for giving me the permission to embrace what really happened and stop blaming myself for everything when I really had no control over it once it started and the mw's dropped the ball. Had I stayed with an OB the whole time instead of hiring a CPM (and then getting stuck with a DEM), all this might very well have been avoided entirely, or at least rendered not-as-bad. I trusted those midwives to act in my best interest, to recognize any problems before they went critical, to be there for me... but they don't have the knowledge or training to do that. I know that now.

Wednesday, May 4, 2011

Angela's story

As told by her mother Nicole.

Angela was born on 9/4/09 after 5 hrs of active labor and 29 minutes of pushing, a week late. She was born at home in my bed with 2 midwives attending, one was a certified nurse midwife. Angela was very active in my belly. She moved a ton compared to Kole, my first. I just knew she had the cord around her neck. During labor my water never broke and my CNM didn't break it until right before she crowned. After not being able to find her heartbeat my midwife broke my water and check her neck for the cord, while she was still inside. After she broke my water and being unable to get the cord off her neck they found her heartbeat and told me we need to get this baby out. So I pushed as hard as I could. It took her a few minutes after being born to cry. After a few minutes and oxygen she was perfect.

She was a very vigorous nurser and just wanted her mommy to hold her. I was so in love immediately. Everyone thought she was tiny but I knew she was a big girl. When the midwives weighted they were shocked. She was 7 and a half pounds and 21 1/4 inches long.

She was born at 12:30 PM. I spent the rest of the day holding and nursing her. Some friends came over and held her a little. And her daddy only held her a few times that day. Finally, when everyone left and my husband got our son to bed then we went to bed.

I laid her on my pillow so I could listen to her breath. She woke up and I tried to nurse but she wouldn't latch. So I checked her diaper and she was wet. I cleaned and wrapped her up and we went to sleep. She woke again an hour later and again wouldn't latch on. She went back to sleep only to wake an hour later. Around 11:30pm she nursed really good and went to sleep. But woke an hour later I checked her diaper she had a big wet fart. I cleaned her up she went back to sleep and did it again an hour later.

She was crying a lot so I laid her on my belly to get the gas out and she was gassy but hated laying on her belly. The night went on like that. Then around 6 am she was crying really bad and had a big bowel movement. It kinda of got stuck I cleaned her up but she continued to cry and hadn't nursed since 11:30pm. At 7am I called the midwife and she said she was probably tired and to get my husband to walk around with her so she could get a nap and the assistant would come over.

I took her to her room to put warmer clothes on her and noticed she had another bowel movement that was stuck again. So I cleaned her up and hand her over to my husband. That was the last time I held her alive.

I took my son down stairs and got him and I breakfast. My husband called down "how do you know if she is breathing?". I said her chest will be moving and thought he was being dramatic. Then I started freaking out and ran upstairs. He was looking over her in her crib and she was turning blue. I grabbed and started blowing in her mouth thinking that would help her catch her breath. My husband screamed call 911 and took her and started breathing in her mouth while I talked to the operator. The operated walked me though infant CPR.

The EMS got here and got her to the truck. My husband and I stood in the street praying. Then I rode with her in the EMS begging God to bring my baby back to me all the way to the hospital. When we were almost there I started thinking positive that she had to make it and be find infants are resilient. They let us in the room while the worked on her and we prayed.

Then the doctor came over to us and said after an hour there is really no hope. We freaked out. So they kept trying. After another 10 or 20 minutes I just walked over and told them to stop. She was gone. The guy making her heart beat didn't want to stop but I told him it is ok. They took out the tubes and we held her and talked to her for a long time. The assistant midwife came to our house too late and followed us to the hospital.

I totally blame myself. I should have know something was really wrong. I, as her mommy, should have been able to fix it.

Two months later the autopsy showed acute pneumonia, multiple lung lobes. Devastating. I hired the best a Certifed Nurse Midwife. Why didn't she see something was wrong?! The medical examiner's office did not culture the bacteria so I'll never know what or where or who it was from. I had a negative group B strep test at 35 weeks. But the midwife forgot to do it at that visit so she sent me the test to swab myself and send it in. Sometimes I think maybe I did it wrong. But from what I have read your water has to be broken for hours to infect your baby.

I miss her and love her all day everyday. I'll never forgive myself for not calling for help sooner and for having a home birth.

Sunday, April 17, 2011

Grant's story



As told by his mother Rachel.

My son, Grant was born on 6/30/2010 at 38 weeks gestation. 6lbs 9oz, 19 inches long. And perfect in every way.

My midwife was a fine midwife for perfect births, but I know from experience that you can have a perfect birth by yourself at home. My son Owen was born unassisted at home with just me and my husband. I take a lot of pride and it takes a lot of work to go against the grain. I believe in all things natural and holistic. It took the death of my child to no longer believe in Home/birth center birth.



A midwife should be there for you if something goes wrong. This is why I went to a birth center for this 2nd baby. I had a wonderful experience at home with my unassisted birth. I can't think of a more beautiful birth. My intentions for my 2nd son, Grant were that he would get that special and beautiful birth. But now having a son and knowing just how important babies are, we decided to do it the safe and natural way. I had all the confidence in the world in my midwives. I didn't even think I would need them. I first, never thought anything would ever go wrong and secondly, I figured this lady had birthed so many babies that she had seen it all. If by any crazy chance anything did happen. She'd have my back and take charge. I was wrong.



I'd been having terrible "Braxton Hicks" for 2 weeks before the day I went into labor. I told my midwives (I had seen 4 different midwives at this birth center) about the pain. I was told that it is common to have painful false labor with the 2nd child. I didn't push it, I'm tough. I can handle it but man it's starting to wear me down. I wasn't getting much sleep at night and they were very painful, like transitional labor contractions at times. I kept thinking that this baby was going to come any second. They just smiled at me and told me to hang in there. I did.

The day I went into labor was 6/29/2010. I was sick, flu like symptoms and a lot of painful contractions. I called the birth center and told them I think I needed to come in. I was told that the flu can give you false labor pains. I hung in there once again. I finally called at 6 pm and told them I needed help and was starting to feel scared. They had me come in. We dropped our 2yr old son off at a friend's house and we were ready to bring this baby into the world.

When I arrived the midwife on duty checked my cervix at 3cm and told me to lay down to see if I was progressing. They checked the heart beat every 10 minutes and told me the baby was great. My labor stalled. I was sent home in tears. I'd been in intense labor all day. I'd been in intense labor every night for 2 weeks. I wasn't sure how much longer I could take this. I was told to drink lots of fluids and take a warm bath. We picked up or son and headed home.

The bath seemed to help and relax me. I was tired, very tired. I fell asleep and awoke at 8 pm with very intense contractions. I was thinking it was transitional contractions and that the baby would be born very soon. We woke our son and drove in the car. The contractions were so bad I was vocal about it. Normally during contractions I would meditate until they passed but these were bad.

We arrived at the birth center but this midwife was running late. She showed up 10 minutes later. My husband dropped me off and drove our son back to our friends. We got into the room and I told her I was feeling scared. That something didn't seem right. She checked me and I was still at a 3. I started to cry. I told her I couldn't take much more and asked if I could get into the bath.

She poured the bath as I paced the room. She said to me, "I'll support you if you want to get an epidural." I remember taking a pause from the pain and thought... I really should go to the hospital... I'm scared. But at the same time I wasn't worried about something being wrong but she was telling me I couldn't handle the labor she would take me to the hospital.

I was then offered a back up doula. I wish I had accepted the offer. I wish I had had someone there that cared. The midwife wasn't in the room much while I was in the tub. I was mostly alone trying to get through the contractions. Thankfully my husband arrived to support me and help me. There were 4 midwives there at the time I was in labor and so far none of them had touched me or said a kind word. My husband and I were on our own.

My water broke. When my water broke the main midwife finally paid some attention to me while the others stood there with their arms crossed and waited with clipboards. So far up until the water breaking baby's heartbeat had been strong. When my water broke it hurt. The water was clear and everything seemed to be on its way. The midwives finally believed that I was actually in labor. I had to stand up... no I had to squat... or stand or kneel.

My labor was so bad that I couldn't even tell who was talking to me. There was no time at all between contractions. I kept saying, "I can't get a break... I need a break. A minute... something." For hours up until my water broke my contractions didn't have a pause. I don't know what time my water broke. I don't know what time they started to lose the heartbeat, but I know they started to panic.

My son's heart rate dipped when my water broke. The midwife said that was common. Things are adjusting and baby is getting ready to descend. I didn't feel ready to push, but I kept wanting and trying to push. The pain was so intense that I had to do something. I got out of the tub and while crying and screaming told them to leave. They were all just standing there. They hadn't even reached out a helping hand to me the entire time I was there. They were all standing around like I was out of control and they didn't want to set me off.

The pain was unbearable and they were cold and aloof. The main midwife told me she would be back in a few minutes to check on me. When they left, as I was naked I ran over to the corner of the room and cried. My husband trying to comfort me said, "something isn't right is it?" I told him I was scared. He held me while I contracted. He went to tell the midwife that I felt something wasn't right.

She came in and listened for the heartbeat and told me our son's heart rate was low and to push. All of the midwives were there now just standing there staring at me. I sat on the birthing stool and told her I couldn't push. I wanted to because I wanted this to be done and the baby to be here but I could barely talk I was in so much pain. She told me I HAD to push.

My husband asked her if I was completely dilated and she said I wasn't but that this baby needed to come soon or we would have to go to the hospital. My husband got down on his knees and was trying to help me as much as he could. But I wasn't dilated... I couldn't push. Still contracting... still in so much pain. No blood. Low heart rate off and on and still not dilated.

This went on and on. I don't even know how long. I'm trying to push. My husband is holding me and encouraging me and the midwife is panicking but no one, not any of the other 3 midwives is calling the ambulance. The heart rate is low... They all know this.

Let me remind you that when I first arrived at the birth center for the second time that evening I was offered a transfer for not being able to handle my labor. Why, now with my baby dying were they not offering us a transfer? Why were they trying to make me push when I wasn't dilated?

I was moved from the birthing stool to the bed… still not 100% dilated. I was told that I needed to get this baby out now. I'm still trying to push. I've never pushed so hard in my life. The pain is so bad that my vision is becoming blurry. I was given oxygen. When I look back at this scene I still wonder why no one has called for help. The baby has been in trouble and I'm having a hard time... why?

My husband and I were so focused on pushing this baby out as fast as possible and so focused on what we were doing that we couldn't stop and tell her to call 911. We weren't sane. We were relying on all of those midwives to do that for us if need be. We were counting on them to make the decisions that would need to be made when necessary. We were still all on our own as our baby was losing his struggle to breathe.

The main midwife could finally see that I wouldn't dilate and be able to push as fast as she wanted me to. She called 911 and told them she had a labor transfer… not a life threatening emergency. I'm still trying to push and the contractions will not stop and there is no break… I felt as if I was losing my mind.

One of the midwives had stayed with me to monitor the heart rate while all the others had left to call the ambulance. It was me and my husband pushing and crying. I looked at my husband while he is pushing my hair back and telling me to push. I ask him, "Why did they give up on us??" He keeps telling me we’re ok, just push. Another of the midwives enters the room and gets on the bed with us and my husband hears her ask the midwife that stayed, "Is it dead?" [Rachel asked to add this paragraph to her story a few hours after it was originally published.]

The ambulance arrived and they did not know or think this is any type of emergency. They are waiting in the lobby. My husband asks the midwife why they are not coming in and my midwife asks me what I'd like to wear. Can I stop here for a second and remind the world that my unborn child… my 38 week unborn baby is dying and she is trying to get me dressed? At this time I was wearing a robe and stood up and started to walk towards the door. My mind is fuzzy and my contractions are hard but I would have ran to the hospital if they hadn't of picked me up and placed me on the stretcher. I'm starting to feel at this point that the baby may be descending. I could feel him lower.

While being put into the ambulance my husband is told to ride upfront that the midwife would like to assist me in the back. I'm too busy to care and in too much of a hurry to worry. The EMT asks me which hospital I'd like to be taken to. I'm pushing and I yell, "St. Lukes Meridian" This hospital is only 5 minutes away. The midwife answers back, "St. Lukes Downtown" This hospital is 20 minutes away. I say again “ St Lukes Meridian” And she whispers in my ear, "They won't let me stay with you there. Lets go downtown." She answers for me again and we are finally on our way.

*****

I have stopped to take a pause in writing this story because it's too much. It takes me and puts me in such a numb state. Did this really happen? I think I'll write the rest later... and I think I'll lose all the sleep I had planned tonight and instead look at the very few pictures of my son that I even have in my possession and wish so much that he was here... That he was safe and that I hadn't let him down.

He was perfect. He had piano key toes… one up one down one up one down just like his big brother. He had the softest face and the slightest cone head. He had my hands. And he had arms to reach and legs to walk, lips to smile and eyes to shine. I never saw his eyes and I never saw him without the hospital plastics they tried to use to revive him. If you are a parent you know love. You know what it is to love and if you lose that… you could lose it all in a second… you can never be the same. You will survive it but you will never be the same.

*****

It's taken me 2 weeks to come back to writing this story. It's a hard story to write for me. I don't really want to complete this story. The story ends with me leaving the hospital with empty arms. It ends with a dead child.

While in the ambulance I was given an IV and oxygen, I'm continuing to push. I've not stopped pushing since the panic set it. I'm doing all I can. My vision is very blurry and I'm losing strength. I ask for water. I know now that these are signs of blood loss. There is no water. I keep pushing.

I'm yelling while pushing. I'm not fast enough but I'm trying to be fast. I ask her to check to see if she can see my son. She doesn't move. She hasn't touched me other than to check my dilation since we arrived at the birth center hours ago. I'm alone. I ask the EMT to tell my husband in the front that the baby is coming and that I'm trying.

I'm crying. I'm alone. He tells my husband. He comes back and tells me I'm crowning. I'm weak. He holds my hand. My midwife is sitting there ... silent.

We reach the hospital but I hardly even notice. I'm pushing and I haven't stopped. The ER staff reaches me and pushes on my belly. The baby comes about 2 minutes after we enter the doors. He is taken away. My husband follows. I'm covered in blood. They worked out my placenta and the bleeding stopped.

They keep checking me. I keep asking them where my baby is. My midwife still hasn't touched me or said a word to me. I grab her hand and tell her, "Go check on my baby and come right back. Tell me where he is and if he is ok." She leaves. I'm alone. Next… my husband walks in with tears in his eyes. He is broken. He tells me that our son, Grant has died. I will not see him alive.

The medical staff at the hospital surrounds me with love and support. What was all this I had heard about cold and sterile? I was hugged. I was handed my baby by a nurse with tears running down her cheeks with love and compassion. My midwife returns... She's been on the phone.

They ask why we are at a hospital so far away from the birth center. There are 2 closer hospitals. How long was the heart rate low? When did that first occur? My midwife pleads the 5th. My husband and I do not know and are not in the right state of mind to answer.

I was helped up and onto a new bed. My old bed, the EMTs stretcher, is covered in blood from the waist to the toe of the bed. All 3 EMTs are standing there in shock and silent. I see the doctor is talking to them. I find out later that they should have been told it was an emergency, not just a labor transfer. They would have been obligated to take me to the nearest hospital. If someone has a stroke, they don't ask them which hospital they prefer.

The ER doctor that assisted us while we were at the hospital told me: abruption. Hidden abruption is the diagnosis. Severe pain with contractions, contractions with no break. Loss of vision and weakness, thirst, heart rate lowers ... and if those are not enough symptoms and reasons for concern ... baby dies.

I am holding my son. He is warm and soft. He is perfect. He is beautiful. And he is dead.



How do I put him down? I can hardly come to terms that I will have to hand him back to someone and leave. That I will never hold him again. I hand him back. My arms ache. My heart aches. I can't leave the hospital. I stop almost 100 times on the way to the door and my husband and the nurses have to remind me that my 2yr old son is waiting for me at home and that I have to leave. My baby is dead. I feel like I am leaving him there. Who will hold him, "I will hold him," the nurse tells me with tears in his eyes.

Thank you, nurse for showing compassion and holding my son. The hospital staff later took pictures of my son. Hand prints and foot prints. They saved all his blankets and clothes. They have all written me heartfelt letters, flowers and mementos of a baby that should be in my arms. I got a tropical plant from the birth center 4 days after my son died 6/30/2010. And life changes...



I hear a baby cry in all the different rooms of my house during the night. I dream that I am holding him and that I lose him in my blankets. My mind races. "Where is he?! He was just here! I had him in my my belly, I held him in my arms how could I have lost him so easily??!!" I panic. I wake up I hear him crying and I start to tear the room apart. I'm sobbing as I'm realizing that I'm looking for a baby that is not here and never will be.

I'm not asking for homebirth to stop. I'm not asking for midwives to all lose their jobs. I'm asking for people to have the knowledge that your child dying because their midwife is scared to make the right decision. I'm asking that in the case of an emergency that they put aside whatever pride or whatever it is and kick into gear their life saving abilities. If they do not have this ability, get a desk job.

My son is dead. If I had been laboring in a hospital he would be alive. If I had been birthing at a birth center with a midwife with LIFE as her first priority… he would have had a standing chance. When you are in labor and you are in a the middle of a labor gone wrong you cannot act for yourself. You cannot save your baby. You have to have a midwife that is capable of making these calls before it's too late.

How will you know that your midwife has this ability? You won't know until it's too late. I stand by what I say... I'm not challenging anyone. I'm just missing my baby and my heart will not heal. He would have been 9 months old when I starting writing this story. I have been living for 9 months with a broken heart. I've got a lifetime to live with this broken heart. I have a lifetime of hurt.

And I can say I know now. I know now not to ever risk a home/birth center birth. What good does this knowledge do me if my child is already dead. The only good it does is that I can tell someone else.

Monday, March 28, 2011

Zen's story



As told by his mother Elizabeth.

Half way through my pregnancy, I made the mistake of watching The Business of Being Born. It absolutely terrified me. I was convinced that should I allow the hospital to be a part of my birthing experience, I would be given Pitocin. The Pitocin would make the contractions unbearable. I would then be given an epidural, forced to labor on my back with a fetal monitor attached to me, unable to move or feel my first child come into the world.

As a young, single, soon to embark on the greatest journey of my life, I was beyond concerned. Also, as a prior victim of domestic violence, all of my hospital experiences were very negative. I wanted the organic experience- as close to nature as I could, within reason and safety, get to. I wanted to eliminate the chance of succumbing to the temptation of drugs to bear labor, not just for the experience, but for the safety of my son. I wanted immediate skin to skin contact, the first crawl to the breast, and mother to mother support in an environment I was most comfortable with- my own room, my own bed, in my own clothes, on my terms. I had extreme faith that I was strong, young, very capable, and that my body would know what to do.

When I asked my obstetrician about natural, active childbirth, she said, "We'll see." That was not good enough for me. We'll see?! Was it the folly of youth that gave me such a strong desire to need a guarantee of safe passage into motherhood? The fear of the unknown? Being alone without a partner to ease into the rhythm of parenthood alongside me? I did not want whatever obstetrician who happened to be on call to deliver my child- I was looking for a wise, experienced shaman to guide me safely through the oceans of fear, pain, and uncertainty and dock me safely in the harbor motherhood- a journey, rite of passage, centuries of women took before me.

I transferred care to a midwife. Towards the end of an uneventful pregnancy, my midwife asked if I wanted to be tested for Group B Strep. She said not many midwives tested for it- that OB's had just begun, within the last 5 years to routinely test for it. Since my prenatal care had begun with an OB, I had been tested for everything under the sun and the results gave me a very a strong peace of mind. Knowledge is power- of course I would take the simple swab for more knowledge.

The result was more than a hiccup in my birth plan. I was GBS positive. Which meant, according to my research, that I would need at least four hours of antibiotics before the birth of my child. IV antibiotics my midwife could not provide. I was heartbroken and began mentally preparing for a hospital birth. My family was relieved. However, my midwife was unconcerned. She kept repeating over and over, "According to state regs, it does not rule you out of homebirth. So many midwives don't test for it- their clients have GBS and don't even know it. They still birth perfectly healthy babies. We can use garlic and a clorohexidine douche during labor. It just means after your water breaks, you only have about 12 hours to deliver the baby." After a while, the repetition of that mantra placated me. I trusted her deeply.

I was two weeks overdue and my midwife was stressed. She kept calling me to see if anything had changed. I had terrible Braxton Hicks contractions without progress or dilation for over 2 months. We had an ultrasound done to check the fluid levels to make sure the baby was still doing okay. She said she thought I was lacking oxytocin to progress my labor and she actually gave me oxytocin pills to take while she monitored the baby.



That night, I went into labor. When my midwife arrived, I was 5 cm. All I wanted was to be on my hands and knees, but she kept forcing me up, forcing herself behind me and pulling my belly up with her hands. It was beyond painful. After nine hours, she broke my water, something we had agreed that based on the GBS, she would not do. She told me there was "slight meconium," and I learned days later from my family who had witness the gush, that it was all meconium. She cleaned up the soiled Chux pads so quickly, I did not see them. We repeatedly did clorohexidine rinses.



I could tell she was panicked because she kept leaving the room to converse with her assistant. Upon returning, she told me we needed to get the baby out immediately and that I could start pushing. So I did. My midwife yelled at me with each contraction, that if I didn't push for 10 full seconds, I was wasting the contraction. She accused me of not wanting my baby enough, of not putting enough effort into labor, she even began separating my mother and sister (people whom I wanted with me!) from me, accusing them of "negative energy and keeping the baby from being born." They kept saying that the head was right there- but I couldn't feel it. I am 22 years old. Very fit. I danced classical ballet for 16 years. I practiced prenatal yoga every day of my pregnancy and walked two miles a day in my last trimester. I know how to use my body, and trust me, every atom inside me wanted to bring my son into the world.



After three grueling hours of being yelled into pushing every ten seconds, I was exhausted. I had not been offered food, water, or any breaks. I remember saying that I was going to pass out, so my midwife put oxygen tubes in my nose and left the room. I was thrashing around the bed, beyond frustrated and in extreme pain. "I can't do it...something is wrong," I remember saying. My mom looked at the oxygen tank. It was not on. When my mom told my midwife that she did not turn the oxygen on, she laughed and replied, "Oh, I forgot." At this point, I wanted to transfer to the hospital.



At the hospital, my midwife refused to give the nurses my chart. She was very combative and would not release any details of my labor or prenatal care. Upon being examined by two L&D nurses, a family physician, a resident, and an obstetrician, they all agreed that I was only 6 cm dilated. The "head" they saw was actually a blood clot on my bladder. An ultrasound showed that my son was asynclitic posterior. (Not only did my midwife constantly assure me that a doppler was very accurate, she told me that my son was LOA- the "easiest" position to labor in! Later she admitted that she should've known he was posterior because she was getting fetal heart tones from the lower left quadrant.)

I was so swollen from pushing that I could not urinate, although I desperately had to. It took two skilled nurses thirty minutes and several tries to insert a catheter because the swelling was so extreme. A fetal monitor showed that my baby was going into distress and an on call obstetrician asked if I wanted an emergency c-section. Although I know I had no choice, I will always deeply respect that he asked- he made me feel like being rolled down to the O.R. was my decision- that I had chosen to completely surrender to his medical care.



My son had to be resuscitated and he was jaundiced - he had a very low APGAR score. Because of the level of care he required, I did not get to see him until after I was done in recovery. Had he not been born in a hospital, he would not have lived. We were both under constant surveillance due to the meconium and the GBS. He had a ruptured membrane in his eye and a bruise on his eyelid and brow from slamming into my pubic bone. I thank the universe every day that my selfish desire to birth in an environment I preferred, instead of what was safest for my son, did not result in death - and I have so much empathy for the women who have lost their babies to homebirth. My son is almost seven months old now, still breastfed, and in the 98th percentile on the growth chart!

My body, however, is not unscathed. There is much internal damage from pushing for so long before being completely dilated. My OB told me that my bladder had prolapsed- that he literally had to pick it up and put it back where it belonged. It is tilted now, which makes emptying my bladder fully impossible without a sit down/stand up/sit back down dance every time I have to urinate! It can be fixed by surgery, but it's not advised until after I have all the children I desire, so it is currently monitored by my OB and a urologist. Due to the internal damage, I will never experience vaginal birth. I will never be a VBAC candidate. Every pregnancy from now on will be considered high risk.

I filed a complaint with the Colorado Department of Regulatory Agencies. The hospital staff, as well as my surgeon, also wrote in complaints against my CPM. The state board is currently investigating my birth and my midwife stands a very strong chance of losing her license due to negligence.

I only hope for the safety of future mothers that she will not be allowed to practice midwifery any longer. No woman should ever have to experience what I did, to know the guilt that I have, the permanent damage that I live with every day. And I was lucky. I know that every day my son wakes up, it is a day to be thankful for, a day that is thanks to an extremely remarkable staff at St. Mary Corwin hospital. I named my son Zen.

Homebirth changed my life forever. I am now currently getting my Bachelor degree of Science in Nursing, to help save women like myself. I can not only attest to the dangers of homebirth, but I will dedicate the rest of my life to telling Zen's story.

Wednesday, March 23, 2011

Thomas' story

As told by his mother Erin

Early in my pregnancy, I called Mrs. O, a midwife recommended by a friend, to see if she could care for me even with my history. I had a history of preterm labors, a cerclage in place and thyroid disease. She said that she could. She explained that she would draw my labs and send them to the endocrinologist as needed, and near the end of pregnancy she would have a doctor remove the stitches [the cerclage that another doctor had placed because of the history of preterm labors].

Mrs. O reassured me that if the baby had problems at birth, she had oxygen and was only 10 minutes from a good hospital. We made an appointment to meet and I saw her exclusively and regularly for the rest of my pregnancy. In addition, I met Dr. M, the doctor she recommended [one of the few doctors in that part of the country who is willing to back up homebirth midwives]. At my appointment with him, he did an ultrasound and we scheduled an appointment for the cerclage to be removed on December 17.

Shortly after this visit I went into premature labor at Bay Shore Hospital and they stopped it with 2 shots. Then I went into premature labor again and went to Christus Saint John Hospital, but the contractions stopped on their own and I was sent home.

When I was 33 weeks, Mrs. O said I was measuring an extra week at every visit and changed my due date from January 13, 2008 that was given to me by ultrasound by Dr. L on that first visit and an ultrasound with Dr. R at 16 weeks to January 05; the new date was consistent with my last period and the measurements at 34 weeks. So that day I went from 33 weeks to 34 weeks instantly.

Mrs. O said she could deliver me at 35 weeks and if I went into labor before the cerclage was removed she would remove it herself. I asked her to just remove it on December 17, as we had scheduled with Dr. M, but she said she would only do it on an emergency basis, because it was out of her scope and she had not done it before.

Mrs. O insisted that Dr. M remove the cerclage on December 2. She wanted to be able to deliver me the day I turned 36 weeks by new due date if I went into labor at that point, without having to remove cerclage herself. He did it reluctantly but said that I would probably make it until full term anyway. At that second appointment with Dr. removed a blue string with a knot at one end and checked me to be sure I had not instantly dilated. I asked him about getting a shot [of steroids] to mature the baby's lungs but he explained that they do not recommend them after 34 weeks. Even after I told him my history with my daughter Gabriella who had respiratory distress syndrome at 36 plus weeks, he said he was sure that something else beside having premature lungs caused her breathing problems.

After the cerclage was removed I had stabbing pain in my vagina with mild contractions. I had many episodes of contraction from then through December 11 2007. On December 8 I called midwife to tell her I lost my mucus plug but because I was not contracting at that moment she was not concerned.

On December 11, painful contractions began at 3:30, instantly one minute apart. I wanted to go straight to hospital because contractions were so severe, and tried to find a family member to watch my kids. I called Mrs. O; she said that she was on her way.

My family arrived at about the same time as Mrs O. She came into the bedroom, and as she got everything ready that I had better not be only one centimeter dilated. Then she checked me and said that I was one centimeter. Then I told her these were 8 centimeter contractions. She checked me again and this time she that the cerclage (which had supposedly been removed) was still in place, but she lacked the equipment to see clearly. I told Mrs. O that I would feel more comfortable going to the birthing center so that she could have a speculum to see better.

We got ready to leave. My mother told the midwife she thought we should call 911, but Mrs. O said that wasn't necessary since she could remove the cerclage herself. When we arrived at the birth center, she unlocked door and turned on the lights. When everything was prepared, she checked me and said she could feel the stitch but could not see it even using the speculum.

She began to try to cut the stitch, and that was very painful. She put a pink dish pan underneath me to catch all the bleeding. She insisted that she was not cutting me as her assistant and my sister took my legs; I had gotten weak from holding them. You could hear the cutting. She would close her eyes as she cut.

I was begged her to stop and she let me get in the tub for awhile. A knot from the cerclage came out in the tub. After awhile she said I was over heating and had me return to the bed. She checked me and I think she said I was 7 but the head was still bouncy, so I agreed to have her break the water so his head would drop down as it had with my previous labors.

After Mrs. O ruptured the membranes, I went back into the tub. She told me to stay on my hands and knees and to push to try to blow the cervix out. After awhile she checked me while I pushed and said she could feel something hard that must be another stitch.

I returned to bed and once again she tried to cut the stitch. She cut for a long time and I begged to go to the exam room because there were stirrups there and she would be able to see better. I knew the walk to the exam room would be a break from cutting me.

In the exam room she tried again to cut the stitch. I was screaming and in tears from the pain. I begged her to take me to the hospital. She said that the doctors at the hospital would have to do the same thing and would be mean to me because I had been seeing a midwife. She told her assistant to give me some the maximum dose of nubain to help me with pain. She cut again and when I was sure much more than ten minutes must have passed she said, "The baby is right here you need to push." I tried to push but the exam table was very uncomfortable.

After much pleading she allowed me to walk back to the bedroom and I lay down on bed and pushed with her hands inside me. After about 10-15 minutes my son Thomas Robert Williams was born she laid him in a towel covering him loosely and then put him on my chest. He was grunting and she rubbed him and suctioned his nose and mouth. She got oxygen for me to hold by his face. Occasionally he would make a fast gulping sound and when my sister told midwife she didn't answer. He tried to pull the oxygen tube away at one time. He made a one second whimper. Both Apgars that were done with him attached to placenta.



Mrs. O tried to get Thomas to nurse by squeezing some of my colostrum unto his lips but he would not suck. She tried to get him to suck by rubbing her finger in and out of his mouth but it did not work. She put a hot rice sock behind him, but it was too hot and I pulled it away. Next she clamped the cord and asked who wanted to cut it. my sister cut the cord.

Mrs. O started to diaper Thomas and he peed on her. Then I dressed him. He was still struggling to breathe. When we asked if he needed to go to the hospital she said he was transitioning. She said that she had delivered a 34 weeker who was on oxygen for 7 hours and did fine, and a 35 weeker who needed oxygen for five hours and was fine.

I went to bathroom and I was bleeding heavily. Mrs. O helped clean me up and I returned to bed. I held Thomas, positioned him upright and tried to help him breathe by stimulation. But when Mrs. O returned to the room she lay Thomas on the changing table and said it would help him breathe better. She taped oxygen by his face. She explained that he was being sluggish and lazy from the pain medicine I had received. I was able to get some sleep.

My husband arrived about 4:45. We looked at Thomas and I told Mrs. O that he sounded worse and asked if perhaps he was hungry. She tried syringing some formula into him but he started to choke. She sucked it back out and said, "No more formula because it makes you turn funny colors." He was gray. She rubbed him and laid him on his side with more oxygen and said we should let him rest.



My husband and I rested and I could hear Thomas breathing even though I was half asleep. After a while there were spaces in between grunting and I thought that he was getting better. When I woke up and lights were on and Mrs. O was doing CPR. She said that Thomas had stopped breathing. I wanted to call 911, but she said to call the ambulance transport company she uses. I found the phone and she called the transport team. My sister then took the phone and called 911.

The midwife asked me to hold the oxygen by Thomas' nose while she worked on him. I held it to my hand and it was not blowing at all. I checked the oxygen tank and it was on empty. Mrs. O had me look for epinephrine. I found it and Mrs. O may have given the shot.

The ambulance arrived and I started to pray. I over heard that his oxygen was 35 percent and that his heart beat was, I believe, 66. When we are leaving 20 minutes later the transport team that Mrs. O had called finally showed up.

At the hospital and they took Thomas while doing CPR. He started to breathe on his own and his color got better; then his heart stopped. I was asked to leave the room. After 30 or 45 minutes his heart started beating on its own again.

The Texas Children's Hospital transport team arrived and I hopped into ambulance. At hospital we were told that Thomas had gone for too long with low oxygen and that there appeared to be severe brain damage; any of his organs could fail at any time. We were told that he had high acid levels. He was diagnosed with Respiratory Distress Syndrome. Dr. G said that we might need to talk about turning off the machines.

Shortly after, Thomas' heart began to fail. When his heart beat was 22 I asked them to remove the machines and we went to the back room and they brought us our son. He died in our arms sandwiched between my husband and me.



After leaving I went to Clear Lake Hospital because I was bleeding heavily. They did one ultrasound. The technician said that there appeared to be a cerclage left in multiple places. A few hours later a doctor came in and said I that there was nothing that needed to be taken care of in the emergency room.

I went to UTMB on Monday December 17. I saw a ER doctor. He said my cervix looked badly damaged but that it was not severe enough to have an emergency hysterectomy. He removed the cerclage and showed me the blue long string with no knot.

Sunday, March 20, 2011

Sam's brain injury and his mother's near death



Sam's story is told by his parents and his aunt.

From a letter Sam's Dad, Frank Comstive, sent to friends shortly after his birth:

My wife Tina lost her mom to cancer last August, well after she came home we became pregnant with our 3rd child – turned out to be a boy, Samuel. We decided after prayer to have a home birth using a midwife, also being turned away from Tina’s OBG because we didn’t have maternity insurance was also we though a little push from GOD to seek out an alternative to a conventional hospital birth.

Ok, now the real story starts – hold on tight. I went to bed at approximately 11:00pm on Monday May 17th (Sam's due date), and fell asleep about 11:30. Tina called to me about midnight that there was blood in the potty. We called our midwife and she was there in 30mins.

After conferring with her "backup" doctor it was decided to continue the birthing process at home but there was talk of a "placenta abruption". This is when the placenta pulls/breaks away from the uterine wall which then in turn causes bleeding. So Tina is in hard labor at 3:00am in the hot tub.

Sam's heart rate started to drop and the decision was made to transport Tina to the hospital. We hopped in the car turned on the emergency flashers and flew down 359 toward Memorial Herman in Sugar Land. So what do I see as I approach 359 and Highway 90 intersection? My worst fear, a train! They don’t have short trains at 3:00 AM, this sucker was a mile long (or so it seemed) so there we are waiting for a train to pass – lots of intense praying, finally the train passed and we were on our way to the hospital.

We arrived approximately 3:15-3:30 AM up to labor and delivery. Lots of people scurrying about even at 3:30 AM trying to decide what to do next, a vaginal delivery or c-section. The doctors decided to prep for the emergency c-section, as this was being done Tina had the opportunity to push and push she did just before they were going to begin moving her to the O.R. Samuel was born vaginally @ 4:00 AM. Blue and not breathing the nurses began working on him, massaging "bagging" him for his breathing. I never did hear him cry.



Back to Tina.

After the birth Tina's blood would not clot, another term I heard was "DIC", which has to do with the inability of the blood to clot. 4:30 AM the decision was made to take Tina to the OR- losing a lot of blood- possible hysterectomy. Called to lab for blood, none available. Tina lay bleeding on the operating table for the next 1 ½ to 2 hours, basically bleeding to death. The chaplain was called in for comfort and prayer.

The doctors came out around 6:15 AM and told me that they were "not optimistic" about Tina’s recovery. I asked the doctor if Tina had stopped bleeding, he kind of shrugged his shoulders and said yes, but that was probably due to the fact that there just was not a lot of blood left in Tina's body. He also informed me that her hemoglobin had dropped to 3. (don't know what the means except it was really bad) Frustration with the lab's inability to provide blood started to show on the doctors and nurses faces as they knew Tina was slipping away.

Finally, some type O (universal type) was brought up and put into Tina. Her body temperature was also very low. One of the ways I knew she was still alive was I could peek into the O.R and see her legs in the air and instruments still inside her and I knew that if she indeed had passed her legs would come down- they stayed up. My sister Candice was with me at all times. Prepared for the worst, we got our knees dirty and prayed hard.

Candice prayed for Tina not to go, I prayed for HOPE. I knew we needed a miracle so I just prayed for HOPE. In a twist of irony: as this was happening the sun was rising. It was truly spectacular. I thought that such a beautiful beginning to a day would be the worst day of my life.

OK, so about 7:00am the doctors come out and tell me that Tina’s hemoglobin has risen to 6 - still dangerously low but rising- legs still in the air – Tina still alive. There is hope, doctors decided against hysterectomy after a lot of consult with other doctors at other hospitals. If in fact they had opened her up she would have bled out on the table. GOD granted the doctors and nurses the wisdom to not operate.

Her hemoglobin rose to 9 about 7:30 AM and one of the doctors actually cracked a smile. He was surprised – we all were – now we really had hope. The day also brought something else, blood products that begin feeding into Tina to basically rebuild her blood. Her recovery had begun. In total they pumped 13 units of red blood cells, 8 units of plasma, 26 units of platelets and 10 units of a clotting agent into her body for a grand total of 51 units of assorted blood products. She is on a ventilator, but it should be removed today – long term effect of blood loss – only time will tell. Long term effects on Samuel due to trauma during birth again only time will tell. Well, that about wraps it up.

Sam's aunt Candice San Pietro, an RN explains what happened to Sam:

Smae began to seize early morning, May 19th. The NICU doctors told me that the baby was being transported to Memorial Hermann, downtown Houston Medical Center for an EEG and further evaluation.

To summarize my nephew’s status, the EEG, (electroencephalogram) taken within 24 hours revealed that his entire brain had been affected by the lack of oxygen due to the loss of blood that he had sustained. A MRI was completed and read one week after admission and clearly delineated that there was global brain damage which confirmed the results from the EEG.



We celebrated when his pupils constricted (even though they were sluggish), when exposed to light via an ophthalmoscope because that meant he was not brain dead. There was a response. We were happy to hear that the sedation medication, Phenobarbital and Ativan, were maintained at adequate levels in order to keep the brain from seizing. It was critical to have the brain rest so it could recover and heal to whatever extent he was capable of. We were so glad to have him taken off the respiratory equipment (CPAP) days after the incident because given time, he was able to take deep enough breaths to satisfy his blood oxygen levels. He could breathe on his own!

In conclusion, my nephew has been diagnosed with sever encephalopathy due to a hypoxic ischemic event or HIE.

Sam's parents brought charges against the midwife in the Texas Board of Midwifery. The Board acknowledged that she had failed to immediately transfer Sam's mother despite evidence of abruption. The punishment? Six months probated suspension. The Comstives have filed an appeal:

We are asking that our case be reviewed again due to the fact that Cathy lied at the Board meeting in September 2010. We hope for a stricter disciplinary action.

Cathy originally lied to the Board at the September meeting when she stated that she was unaware of how much blood was in the toilet due to the paper. I was completely coherent at this time and recall Cathy stating to the physician on the phone that the blood was a substantial amount.

Cathy later placed the blame on the physician for her negligent care/decisions. Her statement to me personally and apparently to the Board as well was that the doctor instructed us to stay home and proceed.

It was only when I was in the hot tub and Sam's FHR started to drop that Cathy demanded I get out of the hot tub and we proceeded to the local hospital for emergency care. At this time 3-4 hours had passed since my initial phone call to Cathy at midnight reporting the blood in the toilet. Had we sought emergency care immediately after my phone call to Cathy, Sam could have been delivered via C-section and would have been fine. At the very least, he would have been less severelyinjured than he is today.

I almost died. My husband was told there was not much hope for my survival. I required 51 units of assorted blood products. Unfortunately, Sam was diagnosed with a global brain injury which means that many areas of his brain were injured due to the negligent care of the midwife Cathy Rude. Sam's official medical diagnosis is severe hypoxic ischemic encephalopathy.

At the date of this letter, Sam is almost 10 months old. Sam can not sit, creep, crawl, pull up, purposefully use arms/hands. He is orally fed but is not able to take in the typical amount of calories as a child his age should nor does he show any indication yet of being able to manage chewing food. He battles with constipation due to the affected muscle tone in his body and he has yet to consistently sleep through the night. I am still up most nights (multiple times during the night) feeding him or trying to calm him so that he can sleep. He has multiple sensory issues which prohibit him from tolerating a car seat, stroller, baby swing, certain positions, touch, noises, etc. His ability to entertain himself due to these challenges are very limited therefore he requires much interaction from his family. Caring for Sam each day is exhausting work.

Cathy Rude has remained in utter denial or unwilling to accept the extent of damage done to Sam due to her negligent care. Upon our last communication, she was giving advice to me as if Sam was a typical baby. Cathy has been able to return to her life as usual....even opening a birthing center....while remaining in denial. My family’s life has forever changed.

We don't know what Sam's future holds. We know that each day is very hard work and we continue with therapy (PT and OT) each week in the hopes that this will indeed help Sam to live a somewhat normal life and that he will have a chance at an independent life as an adult. At this time Sam has not been given any further diagnosis besides the initial HIE diagnosis but we expect that he will at some point be diagnosed with cerebral palsy as this is the indications that we get from his physical limitations and this has been brought up by medical professionals involved in Sam's care.



Sam's parents have begun lobbying for a law mandating malpractice insurance for certified professional midwives. Their efforts were reported on local Fox News:

While Frank and Tina still support the use of midwives and home births, they want to see a change in state law that would require midwives to have liability insurance.
"When the wrong decision is made then there should be a financial obligation to the injured," Tina said.
"It's not about me, or Tina or Sam," Frank said, "It's about the next Sam or the next Samantha."


 


Addendum: Same passed away in April 2013 as a result of aspiration in his sleep. I received the following from his mother.
We lost Sam during his sleep 4/26/2013 due to aspiration.
The autopsy ruled that it was directly related to his labor/birth injuries.
We had a celebration of Sam's life on 5/18/2013........what would have been his 3rd birthday. Our family is heartbroken yet due to our Christian faith, we do rejoice for Sam. He is now free of all limitations........fully restored as God had originally intended.
Sam never talked, sat up, crawled, stood, walked, used arms/hands purposefully. He was completely dependent on us for his care. He was orally fed but it was always a challenge and he never had enough caloric intake so most of his nutrition was by PediaSure/Boost.......Sam was still on a bottle.
He was our sweet, precious little boy. He seemed very aware and interested in his surroundings...........had a twinkle in his eyes and a huge smile............wonderful laugh/giggle. He knew all of his family and those involved in his daily care/weekly therapy.
From Sam's obituary:

 

Samuel Frank Comstive 2, of Richmond, TX ran through the gates of Heaven into the awaiting arms of Jesus Christ during the wee morning hours of Friday, 4/26/2013.

 Sam was born to Frank and Tina Comstive on May 18, 2010. He was welcomed into the family by his big sisters, Rose and Lily. Caring for a child with special needs was the hardest challenge our family had ever endured yet there was much joy and reward. Sam impacted so many lives in such a short period of time although due to his disabilities, never spoke a word. Sam brought together a group of ladies that have formed a support group for families of children with special needs....The Special Mom’s Group.

Sam loved people and they were all drawn to him. Sam had a smile that could brighten the darkest room and a light in his eyes that reflected the love of Jesus. Sam’s last day on this earth was spent with people that loved him the most. He was greeted in the morning by his Daddy and played with...”daddy-style”. Sam was smiling from ear to ear and giggling as they played. He then spent a few hours at the Fort Bend Shriners circus where he was the only person in the crowd to receive a clown nose from one of the clowns. Sam continued to enjoy the rest of the day surrounded by loved ones.

The autopsy report concluded that Sam’s passing was directly related to the injuries he sustained during labor/birth. Sam aspirated during his sleep. Aspiration was one of the many threats to Sam’s health due to his injuries. It appears that Sam never awoke. What a blessing!!! To spend the day with the ones you love, close your eyes and walk into the arms of your Heavenly Father...the one that loves us most.

Sam had a purpose. (Romans 8:28) Sam fulfilled his purpose and God took him home in order to spare him any further hardships due to his disabilities. Our family is positive that Sam was greeted with the words, “Well done, good and faithful servant”. Our family is heartbroken yet we find comfort in knowing that Sam’s body has been fully restored as God had originally intended. Sam can now walk, run, dance, talk, sing, etc. Glory to God!

Left behind to treasure our time with Sam are his parents-Frank and Tina Comstive and sisters-Rose and Lily ... paternal grandmother,.. paternal grandfather,.. maternal grandfather,.. and caregiver Adriana .. and her son Angel... Sam was also loved by his extended family members. One of many to greet Sam at Heaven’s gates was his maternal grandmother...

We will have a celebration of Sam’s life on what would have been his 3rd birthday, May 18. We will have birthday cake!... One of the best blessings in our life is Adriana ... “Ms. A” has helped us love Sam for the past 2.5 years. She loved Sam as her own and he loved her. She is forever part of our family...

Wednesday, March 9, 2011

Wren's story, on the 1st anniversary of his birth and death



On March 9th, 2010 at 12:12pm, after about 12 hours of labor, our first child Wren Jones (高小虎) was born to mom Tweeny and me, Josh, at our home in Santa Monica, California. Although he was only 36 weeks 5 days of gestation, he was 20.5 inches long, weighed seven pounds even and was as healthy as could be. We had a perfectly normal and healthy pregnancy and delivery; Wren immediately had a lusty cry and great apgar scores. He even latched on and breastfed without difficulty, and after a few hours our direct entry midwives finished sewing things up and left us to start our new family together.



Immediately we went about the process of notifying friends and relatives, taking pictures and videos, and checking and re-checking his diaper. That afternoon we got a package from Tweeny’s sister’s family, some belated birthday presents for me (my birthday is March 4th), which ironically included exactly the same Washington Redskins t-shirt I was coincidentally already wearing! No problem though, now Wren and I could have matching t-shirts. A few hours later we video chatted with Sheireen, Neal, Brandon (7) and Alyssa (4) and introduced them to their new nephew and cousin! Neal reminded me how I’d mentioned that it’d be cool if somebody took a picture of their kid every day of their life and made it into a video later and said I’d better get on it. Afterwards, I took a nice straight-on picture of Wren for frame one.



I went out to pick up some food for Tweeny at Huckleberry, and while she ate I took Wren out to the living room and watched the end of the Celtics game with him (they lost to the Bucks!). Wren was being really cute… he kind of made a “cooing” noise with every breath, even while he was asleep. I put him on the phone for my friend Ajay to hear when I called him, and I made an audio recording of it with my iPhone too. We weren’t sure if that was completely normal, but after doing some Internet research it looked like lots of babies make funny noises a lot.

[Here is an audio file of Wren's breathing. His parents did not realize it at the time, but Wren is grunting, a sign of respiratory distress. He was already very sick.]

It was getting late, so we started getting ready for our first night as new parents. I checked Wren’s diaper again, but still no meconium. He was still making the cooing noise, but I remembered another friend’s advice to let your baby sleep on your chest because the heartbeat is very soothing for them. I laid in the bed next to Tweeny and put Wren down on my chest and he finally started to quiet down and get to sleep. I read the New Yorker while Wren drifted off on my Redskins shirt. Every once in a while I’d check on him and he’d twitch like he was having a dream.

After about an hour, we decided it was time to move Wren to his bassinet and hit the hay. Tweeny noticed his face looked a little purple but thought it must have been the reflection of my burgundy shirt. I started to shift him up and noticed there was a tiny drop of blood on his finger that had been near his mouth. Then I noticed there was blood on one of his nostrils, and his feet and arms were ghostly white. Wren wasn’t breathing. As panic started to set in, Tweeny called 911.

They kept Tweeny on the phone and led her through CPR while we waited the three minutes for the EMTs to arrive. They were very steady and solemn when they arrived and quickly took Wren into their ambulance and off to Santa Monica Hospital just ten blocks away. Tweeny got some pants on and we followed behind them as fast as we could. There was a quickly developing pit in my stomach, and although I feared the worst, I also knew this kind of thing never happens to us, and everything would work out fine.

Shortly after we arrived at the hospital, two police officers asked us what happened. It struck me that all they know is an unrecorded newborn was found in bad shape in our house. They were very sensitive, but it was still an uncomfortable realization. Right then a nurse interrupted and asked if we were Wren’s parents. By the look on her face I started to fear the worst. Just as she was asking to come with us to a room however, another nurse came over and stated that they had a heartbeat!

We followed her over to the ICU and there we saw our tiny Wren on a stretcher with all kinds of machines and wires and tubes hooked up to him. There were about two dozen people around, including all the EMTs and the police officers, as well as every member of the hospital’s medical staff on duty. They called in a specialist who arrived quickly and started commanding the efforts. From about 1am until 3am we stood by and watched as they tried to resuscitate our beautiful little boy.

Finally, the specialist let us know that even if somehow they ended up being able to keep Wren functionally alive, after this long with no oxygen he would have no functional brain activity. We held his tiny little hand and let them pull the plug.

Afterwards we went back to the little room and held him, talked to him, and cried, and cried, and cried. Eventually the specialist came in and tried to give us some possible explanations of what happened. She said it was likely a congenital heart condition, and that these things can just happen, and there’s no sign of it, and even if we’d given birth in a hospital setting this could have very likely still been the result. It was nice of her to say these things to us, but it still felt weird, because everything had been so perfect through all our check ups (we were even playing it extra safe and seeing regular OBGYNs along with the home birth midwives) and neither of us has any family history of anything of that nature.



Months later, after the funeral, the burial, and a lot of questions and research, we finally got the definitive answer from the autopsy (the police required an autopsy). Wren had died from pneumonia due to an invasive Group B Streptococcus infection. Everything else about him was perfect.

By the time we received the report we had a pretty good idea that's what it was. You see, in our very first checkup at the OBs GBS showed up in Tweeny's urine sample. They prescribed some oral antibiotics and she took them. Later, as we were approaching the time to take our 35-37 week GBS test, our midwives recommended Tweeny start putting a garlic clove in her vagina nightly to try and kill the bacteria. Tweeny followed the regimen faithfully.

Come 35 weeks we took the GBS test with the OBs. Usually these midwives do it themselves, but since we were seeing the doctors anyway, they suggested we just get the results from the hospital rather than running the test twice. At the time of the test, we asked the nurse what the GBS test was really for, and she kind of brushed it off as nothing to be alarmed about, "it's just this test we do for everybody now… we didn’t even do it like five years ago!"

We had our next check-up scheduled for two-weeks later, on Wednesday, March 10th. It would have been on March 4th, but since that was my birthday we put it off. Previously our OBs had said they call us if the result of any test is positive, but if it’s negative and there’s nothing to be alarmed about, they just tell us at the next visit. As it turned out though, the next visit never came.

The happiest and saddest day of our lives came and went on Tuesday. GBS was the farthest thing from our mind. But once things had settled down a little and we started looking for answers, we finally remembered that we’d never gotten the results back of that GBS test. In fact, the coroner themselves asked us if they could get a copy of the GBS results.

It was positive. The results had been known since February 28th, but the midwives never got a copy, nor did we. Of course, if we’d been following the correct GBS protocol, that wouldn’t have mattered, but after taking the oral antibiotics earlier, doing the garlic regimen, and not hearing back from the OB, we all just sort of assumed we were fine.

Tragically, we weren’t.

We’ve learned a lot about GBS since then. Here are the things that went wrong in our case:

If GBS ever shows up in your urine during a pregnancy, you must get the antibiotic IV when you go into labor, end of story. It means you are heavily colonized and far, far, far more likely to infect your baby during childbirth.

There is no scientific evidence of any sort that garlic or any other homeopathic remedy will offer any protection from a GBS infection. In fact, we serve as a powerful counter-example to that hypothesis. Doing such treatments may in fact lull you into a false sense of security and perhaps make you complacent about the severe risks GBS carries.

We focused all our worries and attention on the pregnancy and the delivery itself. We subconsciously believed that if we just got Wren out and he was healthy, we were home free. Unfortunately, GBS-infected babies will show no signs of the infection for several hours after birth. They’ll have lusty cries and high apgar scores and be perfectly normal. There’s nothing genetically wrong with them, they just get sick. And you need to treat a sickness with medicine.

There is so much to worry about when you’re pregnant, and unfortunately, most of it is out of your control. Preventing GBS is one of the few things that is. All you have to do is get the test, and if you’re positive (and 30% of women are), get the antibiotic IV as soon as you go into labor, and you’ve just (provably) decreased your baby’s chance of getting infected and dying by 99.8%. There is no downside to getting the IV: if you’re one of the 0.01% of people severely allergic to penicillin, they have other antibiotics that are just as effective. If you’re willing to give up alcohol, seafood, coffee, smoking, etc... for 9 months for your baby’s health, why not get some necessary medicine for 4 hours?

Ironically, Tweeny’s sister had been GBS positive for both of Wren’s cousins’ births, and for the second one her labor was so short that the hospital was unable to set up an antibiotic IV. Instead, they administered the drugs to her daughter directly when she was born, and monitored her carefully for 48 hours. Alyssa just started kindergarten this fall.

It's now been a year since our beautiful boy Wren was born, lived, and died. At first, I was surprised at just how few people knew about Group B Strep, and I latched onto it as a "cause" that could bring some meaning for me to the events that transpired. However, it quickly became obvious that it wasn't GBS that was the real problem… although our friends and relatives hadn’t heard of it, it is well-known throughout the medical world, and the reason there isn’t much heard about it is that we have a completely safe, 99.8% prevention method for it.

It eventually dawned on me that real smoking gun in this situation was our decision to do a home birth. My wife had gotten interested in home birth partly through seeing "The Business of Being Born" and because she didn’t like going to hospitals. She really just liked the comfort of being at home. I was skeptical about the risks at first, but after we went to a couple different providers around Los Angeles, I came up with a mental model that made me comfortable with the idea: home births were like whole foods!

My feeling about whole foods has always been that the food there is actually no better than your average grocery store, but it’s no worse, and if rich people want to waste a little dough on a fun grocery experience, well, it’s their money.

The cost of home births surprised me… I had assumed they were cheaper than going to a hospital, but they were far more expensive ($5,200 and they don’t take insurance). After reading some study I was finally convinced that as long as: A. we were low risk, B. we got really good midwives. and C. we were really close to a hospital (we live 1 mile from a great one), having a home birth was as safe as a hospital birth. Not more safe, but as safe. And more expensive. But if you could afford it and wanted to, no reason not to.

As I mentioned before, we even hedged our bets and went to all our regular checkups with the doctors as well. We even told them about our plan to do a home birth, and though they didn’t recommend it, they never really told us why. Now I can tell them.

A. You don’t really know if you're "low risk" or not until it's too late. Our entire pregnancy, labor, and delivery were completely “normal”, except for the high GBS colonization. But everybody downplayed the risk of GBS, which made us complacent and feel like we were still low risk.

B. You don't know what "really good" midwives are. The ones we picked (http://www.socalbirth.com/) are licensed by The California Medical Board and certified by the North American Registry of Midwives. They are CPMs, LMs, MPHs, and LLCs. They’d been in business for decades and delivered thousands of babies. It turns out that unless they’re a CNM (Certified Nurse Midwife), they actually have no medical training. And 99% of CNMs won’t do home births.

C. It doesn’t matter how close you are to a hospital, babies can go from seemingly perfect to dead in less than a minute. It was less than six minutes from when we noticed something was wrong with Wren until he was in the NICU, and it was already too late.

Overall, I just feel like a fool. My entire focus throughout the pregnancy was on the labor, the delivery, Tweeny’s experience, and maybe the first few minutes after birth. Once he had ten fingers, ten toes, and a lusty cry, I figured we were in the clear.

I was wrong, and our poor defenseless baby boy Wren paid for my ignorance. I thought I had everything figured out, I thought we would glide right through it all, I thought we were so cool.




I learned so much on March 9th, 2010. But it wasn't worth the price.

Thursday, January 27, 2011

Mary Beth's story



(as told by her mother Bambi)

On June 5th 2008 (24 days before my due date), after a very long labor, I gave birth to a 5lbs 8oz 21 inch long baby girl. Throughout the labor, I had kept my midwife, Brenda, posted on my progress. Of course, she didn’t bother to hurry up and get to me when she knew contractions were only 3 minutes apart. She received a phone call from me at 4:10am. She arrived here at 5:45am. This woman lived 20 minutes away.

My husband was forced to call medics because it became obvious that delivery was imminent and we would have no midwife here. As soon as he hung up with them, he had to catch our daughter, then minutes later let the medics in. If I recall, one had been at a delivery and the other never had, so this tells you how much birthing/newborn experience they had. They thought, planned homebirth, but just a few days shy of term, shouldn't be an issue so they waited for my midwife to arrive so she could assess the situation. They thought she was fine.



An hour later, in waltzes Brenda. Of course, our daughter is healthy and there is no need for transfer! She helps us to bed and proceeds to do the newborn exam. We bring up our daughter’s breathing and are told it's just mucus. Ok. The odd bluish purple coloring around her nose is just bruising. Her sleepiness was due to the long (18 hour) labor. Her floppiness was due to just being a tad early. I was also told she wouldn’t be able to regulate her temperature so she needed lots of skin to skin contact. Her jaundice could be helped by spending time in front of the window. She wasn't interested in nursing because she was tired. Everything was explained away and none of it seemed far fetched to me. I believed her when she told us Mary was healthy. Brenda then left.

I then took an hour nap with her as I had been up for 26+ hours, with 18 of them being in labor. When I woke up I tried nursing her and no latching. That concerned me, but I figured if I just pumped she would take a bottle. So, I sent my husband off to the store to buy a bottle for her. When he got back home, I pumped and she wouldn't take the bottle. Maybe she was just tired.





We spent time as a family while letting our other children hold and love on their baby sister. They were quite proud!! Around 10, my husband offered to let me get more sleep while he kept Mary in the living room with him and the kids so she could be in the sunlight. That sounded fine with me. Little did I know, this would be the last time I would see her alive.

At 11, my husband woke me up because he didn't think she was breathing. He thought she had just went to sleep. Mary was lifeless. I remember calling 911 and doing CPR. One of the medics from just a few hours before came running up to our door, took her right out of my arms, and ran to the back of the ambulance while I got in the front. I remember thinking "This can't be happening."

When we arrived at the hospital, her room was filled with doctors and nurses. I was set on a chair in the hallway watching the commotion. There was a social worker who was keeping me posted on everything they were doing. She told me that they had given her two shots of epinephrine, but if they got her back, she would be brain damaged. After what seemed like forever, I was told there was nothing more that they could do and a time of death was called. How could this healthy baby be laying there dead? How could this be happening?



Mary was then wrapped in a blanket and handed to me. At one point I was asked about having our pastor come in and I gave them his name so he could be called. I don't remember if this was before or after she was pronounced. Dr Bailey arrived, then my husband James arrived. While we did CPR and called 911, we had our oldest son, Cody, call my mother at work to tell her what was going on, so James had to wait on her. A photographer, Teresa, arrived to take Mary's pictures. While she took photographs, James and I took turns being questioned by a detective and medical examiner. The chief from the fire department also came to give us his condolences.



Dr. Bailey held our daughter and baptized her. The social worker asked me her name and I chose the name Mary Beth. Our oldest daughter, Paige, had mentioned the name that morning while we were discussing names. So, when James arrived, he learned of her name. When he held her, he completely broke down.



While we were at the hospital, my mother had had my sister Jaime come down and then the police showed up to our home to ask them questions as well. Once my mom knew that our daughter didn't make it, she rushed to the hospital. When she walked in, she came up to us and hugged us both. I then asked her if she wanted to hold her granddaughter ad she did. I had never seen my mother like that. When she learned Mary’s name, it hit her even harder as they share a name.

By this time, we had the medical examiner breathing down our necks to just hand our daughter over. He had been at the hospital for several hours and was tired of waiting around. So, just 4 hours after our daughter was pronounced, we left the hospital with a brown paper bag containing her belongings. I called Brenda on the drive home to tell her, but she already knew as the police had already been to her house. She then asked what happened and I told her.

When we arrived home, our youngest son, Joshua, asked if the new baby was in the van. We had to then tell our children that their sister went to heaven. No parent should have to tell their children that their sibling is dead. My sister hugged me and told me she loved me (and she still tells me this every year on Mary's birthday). My mom sat on my couch and held me like a small child, literally. I was hurting and needed my mommy, but, she couldn’t make this better like she could 20 years ago.

My mom and husband at one point let family know that she was born and passed away. Friday, we paid for her plot at the cemetery and made funeral arrangements. When they walked in the room with this tiny casket, I broke down. There should be no need for caskets that small. We should have been buying her a bassinette, not a casket. On Saturday, we took her burial gown to the funeral home. Sunday, we were allowed to come in and see her and get her footprints. It was a tradition for us to do our babies feet and I didn't want to miss out on it with her!







I will never forget being led into this tiny room and seeing our tiny daughter laying there. It seems like we stayed in there with her for hours and cried. We gave her her part of my mother daughter necklace and one of my husband’s dog tags from his military days. At one point Brenda showed up to my home with a cheap engraved locket for me and gave us her copy of Mary’s newborn exam. We mulled over that during the weekend and noticed several inconsistencies which my husband took to the police early Monday morning. We had multiple visitors that weekend, too. I couldn’t eat or sleep. When I did fall asleep, I woke up hearing a baby cry. Oddly enough, my husband suffered from the same.

The funeral for our daughter was small and intimate. My mother bought a bunch of plants to have there that we could take home and create a garden with. I don’t think I left the casket. I wanted, no needed, to remember everything about her. I still remember the way her tiny hands felt, the silkiness of her hair, the softness of her cheek, and the way she smelled. Having to tell her goodbye forever was probably harder than leaving the hospital. I couldn't walk or breathe.



At the cemetery, my husband carried her from the towncar to the resting spot. There was a small service and we had to leave her there, knowing soon she would be in the ground beside her great grandfather. In a way, it felt better leaving her "with him." There were a few lighthearted jokes that his peaceful slumber would be over with now that he had a baby to take care of.

Earlier that morning, my husband talked to the police. It turns out Brenda supplied them with another newborn exam form different than the one she gave us. When the police found this out, she was interviewed again! This time, she gave them and us another newborn exam form, also different than the other two. The notes taken by medics (people unskilled on newborns and childbirth) were copied by her. Our daughter had been given APGARs of 9 and 9.

Brenda had the audacity to be waiting on our front steps when we stopped at home to drop off the flowers from the funeral home all kinds of pissed off because there was talk about her possibly being arrested. Interestingly enough, it was other midwives talking about this. Just one week later, she showed up to my home begging me to not be angry with her. Three weeks later we got the death certificate. Cause of death, prematurity. Major contributing cause, homebirth.

I called the medical examiner. I got an answer about the "bruising." It was called cyanosis and occurs when there is oxygen deprivation. She should of seen the signs that our daughter was in trouble. Had medical care been sought, our daughter would have lived.

In between the time of our daughter's death and getting the death certificate, Brenda had been telling people that our daughter died from liver failure. When I asked for copies of my records, she obliged, but also asked if we got the Death Certificate yet, to which I told her No. My records were falsified. You could see clear as day where she had crossed out the number of weeks at the top to reflect me being farther along at each appointment.

When my friend shared that I had indeed gotten my records, Brenda flipped into panic mode. One email stated that all babies who stop breathing are labeled respiratory distress, we didn't share any concerns with her, if we sued we would put her and her kids on the street, our anger would cause a divorce, we should sue the medics, her heart is breaking, she volunteered for a peer review, she loves us, and "Trying to find a place to unload blame doesn't give the answer and it doesn't heal the hurt."

Email two was a basic, medical examiners only know about death so I shouldn't take his word for it and we can figure out why she died together. Email three stated that our daughter wouldn't want us fighting against midwives or home birth. All the emails were quite manipulative.

Come to find out, she had had multiple stillbirths just in the months leading up to our daughter's birth, one brain damaged child, and two other babies that she went in front of the grand jury on. Of course, she is still practicing while we are broken hearted.