The other day, driving home, I heard one of my old favorites on the radio, Bob Seger, singing, "I wish I didn't know now what I didn't know then."
That could be the thesis statement of this post.
Since Lydia died, Justin and I have done A LOT of research, about stillbirth and cord accidents specifically. It is still so hard to believe that my perfect little baby girl just cut off her supply line. I'm not sure I've ever even heard of it before it happened to us. (One thing I know now that I didn't know then: the odds are .15%.)
For the record, I am not pregnant.
But we are proactive people.
Before we even think about that, we want to have a plan in place.
We want to know what will be done to prevent what happened to Lydie from happening again.
I can't bear the thought of it happening again.
I'm not sure I could survive that.
So, besides all our reading, Justin and I have also spoken with Dr. Jason Collins, the only doctor in the US who studies umbilical cord accidents. Not a conversation that brought us reassurance, as he claims that umbilical cord accidents are not a fluke, not sporadic - which is what most other obstetricians claim. And at this point, I've had two pregnancies and two "cord incidents," one resulting in the death of my daughter. He puts the risk at 1 in 7 in a subsequent pregnancy also having a cord incident. Scary, right? So freaking scary, as if a subsequent pregnancy wouldn't be terrifying enough without hearing this statistic.
Dr. Collins used to monitor women who had had a previous stillbirth due to a cord accident in their subsequent pregnancy. He used a fetal home monitoring system, where every evening the women hooked themselves up to a monitor and he was able to see the results from Louisiana, where he lives. I've talked with one woman, who did this. One evening, he told her to go to the hospital and refuse to leave. Her baby's heartrate was monitored at the hospital and they told her everything looked fine and tried to send her home. She refused, and her daughter was born, healthy and alive, in the middle of the night after emergency c-section.
So of course, I'm thinking, sign me up. Until I learned that Collins is no longer able to offer the home monitoring system because the company no longer makes the monitors. I'm sorry -- what?? Are we completely moving backwards? This research is being done, proven that it's effective, and then the company stops making the freaking machines???
So instead, Dr. Collins advised Justin and me on what kind of care I should receive in a subsequent pregnancy. It's a detailed plan, including an in-depth ultrasound scan at 20 weeks examining the cord in various ways, including measurements of the cord and measurements of both attachment sites. It also includes non-stress tests twice a week (of which Dr. Collins wants to look at the results) and ultrasounds once a week beginning at 20 weeks. Non-stress tests monitor movement, heart rate, and reactivity of the heart rate. Collins thinks that Lydie's heart rate would have shown decelerations indicating that her cord was being compressed. I never had an NST when I was pregnant with Lydie.
Dr. Collins believes that NSTs should be done with every low-risk pregnancy. He makes the point that listening to the heartbeat only tells an OB that the baby's heart is beating right now. He thinks that the placenta and the cord should receive just as much attention as the baby, because if anything is wrong with the placenta or the cord, it will harm the baby. He thinks pregnant women should always be advised to count kicks, and taught how to do so. I didn't count kicks in either one of my pregnancies; my doctor never even mentioned it to me. She'd just ask, "Lots of movement?"
But Dr. Collins' research isn't well-known within the medical community. My OB had never heard of him.
Yesterday, my mom, Justin, and I went to meet with a perinatologist, or an MFM, maternal fetal medicine specialist. Basically a high-risk doctor. His office is in the hospital where I delivered both my children, and my anxiety was sky-high just walking in the door. Hello, PTSD.
My own OB was supposed to meet us there.
I had a dream that she wouldn't show.
She didn't show.
(Apparently, her daughter was sick. But I just can't get over how many times she has disappointed me. She makes all these promises, but in these big, important moments, the birth of BOTH my children and now this wildly important meeting, she doesn't even show up.)
The MFM called Lydie's cord accident "sporadic." He won't do the kind of care that Dr. Collins recommends. He said even if he took measurements of the cord, he wouldn't know what
to do with them because the American Congress of Obstetrics and
Gynecology has no published standards. He said he could not be
responsible for collecting data that he wouldn't be able to use to make
decisions. There's no accepted chart, no norms for cord length, no suggestions of what diameter of the cord indicates a problem. He suggested that Dr. Collins be my primary care OB instead (um, he's located in Louisiana so that is not so feasible for our family.) And we are realizing it's all about being worried about being held liable and litigation and his insurance covering him. He won't take measurements and then follow Dr. Collins' suggestions, because I could sue him if something goes wrong.
The MFM's plan was to watch blood flow through the cord at 20 weeks, then start regular ultrasounds. At 30 to 32 weeks (and possibly as early as 28), we'd start NSTs and biophysical profiles, which check movement, heart rate, breathing patterns, and amniotic fluid. And we'd plan a c-section for 37 weeks. That's three weeks later than Lydie died, so doesn't offer me a lot of comfort.
He said he'd talk to his colleagues at other hospitals in the area, see if anyone would recommend anything different, see if anyone else has had more experience with cord accidents or Dr. Collins.
The people I've been talking to at Star Legacy Foundation have reminded me that I'm the consumer here. If a doctor won't give me the kind of care I want, then I find another doctor. But the truth is. I don't think any doctor - in Columbus anyway - will give me that kind of care. Dr. Collins's research is not accepted yet, it's considered controversial at best. So instead, doctors just hope it won't happen again. No doctor is going to do anything that is not endorsed by their Congress. And it's so frustrating that doctors are going to be more concerned about being sued than making sure I have a healthy, and living, baby.
So I'm not sure where we go from here.
In some ways, I wish Justin and I could be like so many other people I've met, who just hear that it was a fluke and accept that, without doing additional research. Sometimes I wish I didn't know so much.
Sometimes the more I learn, the more freaked out I get.
But there are mothers who have had more than one stillbirth. Dr. Collins sent me an article about a mother who had THREE stillborn babies, all due to torsion of the cord. I'm really not sure I could survive that.
If you are my fellow Baby Loss Mamas who have rainbow babies, I'd love to hear what you think here. I realize it's a leap of faith and a HUGE risk regardless, but what kind of medical care did you receive in that subsequent pregnancy? Was it enough? Did it help with your anxiety and feel safer? How much research did you do to lower the risk that it would happen again? Did you find that different perinatologists are willing to offer different levels of care? Any and all suggestions appreciated.