No surgery for us

In the end, the baby qualified for the study but I did not, because of uterine problems.

I'm writing this from the Ronald McDonald House in Camden, New Jersey, where my mother and I have been staying during my evaluation for inclusion in the MOMS study. My father came with me too, which is very special for me because my parents are divorced and I haven't had many chances to be together with both of them since I was nine years old. (My husband couldn't come to the evaluation because he just started a long-awaited new job last week.)

On Monday, we had an incredibly thorough workup at the Children's Hospital of Philadelphia (CHOP). I can't say enough good things about the people there. They are a dedicated and caring group of professionals who could not have done more for me and the baby -- both to give us our chance, or to take wonderful care of us while we were at CHOP. Also, many thanks to Teendoc -- I am quite sure that without her "heads up" about us to Dr. Adzick, who leads up the team at CHOP, we would not even have been evaluated.

Initially I thought that things were going our way, because the very first test -- an ultrasound -- showed that my placenta was at least two centimeters away from my cervix. I could not believe it! Now my placenta is classified as "low lying," and I no longer have a diagnosis of placenta previa. I had also been concerned that I would not make the body-mass index limit of 35, because I am carrying a lot of extra pounds after my years of infertility treatment and failed pregnancies. But I made it with about ten pounds to spare.

However, during that same ultrasound, a few complications were found that I did not know I had until I came here. One was that the placenta has a kind of "offshoot" floating by itself, still attached by blood vessels but not part of the main body of the placenta. I have forgotten the medical term for it. They said this was a variation of normal and not much of a problem in itself, but it would further limit where they could make an incision. Also, they discovered a couple more small fibroids in addition to the large one I knew about. These were not in a place that would cause a problem, but apparently fibroids "irritate" the uterus and would place me at greater risk for preterm labor if I had the surgery.

Lastly, it looks like as the placenta grows with the baby, it might try to expand on top of the large fibroid. Apparently the risk there is of separation of the placenta and uterus at that point. Also, the baby's blood supply won't be as good "through" a fibroid than if the placenta were attached to normal tissue. Even without the surgery, there is the possibility that she won't get enough nutrients and may have to be delivered earlier than normal. Her growth will have to be followed through serial ultrasounds, which we were going to have anyway for the baby's hydrocephalus.

The doctors said that none of these by themselves would have been enough to exclude me, but taken all together, the risk of preterm labor and prematurity for the baby might be as high as 25% if I had the surgery. The consequences for the baby, if she were born before about 28-30 weeks, could be very serious. The doctors were not willing to take the risk on me.

We did not learn anything more about our daughter's condition, except that the fetal echocardiogram showed her heart is entirely normal. As we'd been told before, her lesion is at L4-L5, and she has hydrocephalus and Chiari II. The doctors said that in general terms, we can expect loss of function from the knees down, as well as bowel and bladder impairment. She will be able to have sex but without sensation, and bear children normally with c-section deliveries.

She may have learning disabilities or an IQ that is about 10 points lower than a normal sibling's might be, but on the other hand, some spina bifida children are "geniuses." To some extent, her intelligence will depend on whether she needs a shunt -- as about 80% of chlidren with Arnold Chiari II malformation and hydrocephalus do -- and how many complications she endures from the shunt. At this point her feet are not clubbed, but that could develop as the pregnancy progresses. The doctors would not speculate on how much her condition will degenerate from now until the time when she's born and can have her back closed.

So, it's over. I am heartbroken that another defect in my body has harmed one of my children. My faulty ovaries resulted in the deaths of my first two babies, and now my fibroid-infested uterus has prevented this baby from getting what she needs. Or at least, having the opportunity to be randomized into the surgery group.

The doctors and others on the team emphasized over and over again that it is just not known whether there would have been a benefit from the surgery significant enough to justify the risk of premature delivery. But I believe in it. These are brilliant doctors. If they did not think there were a benefit to the surgery, they would not be doing the study at all. The purpose of the study is to prove the benefit of the surgery so that insurance will pay for it. All one has to do is to go back and read Dr. Adzick's press clippings from around 1997, to know that he believes in it wholeheartedly. My baby simply had the misfortune to be born during the study period, and to be growing inside my defective uterus.

There is nothing more I can do to help my baby until she is born, and I am going to have to live with the knowledge that every day of the pregnancy, her condition may grow worse. I see her little legs moving on the ultrasound screen...her feet even flex, which I was told is rare for a spina bifida child...and it's an agony to know that by the time I deliver her into the hands of people who can help her, she may not be able to do that anymore.

I am told that I should take comfort in that I did my very best that I could for my little girl. But what is a mother to feel when her best simply isn't good enough? I suppose I had better figure that out...because I am sure I will fail her again and again in the future, no matter how hard I try. Maybe that's something all parents have to face, whether their child is disabled or not.

Thank you all for your prayers and good wishes. It means a lot.