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.