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.