Hello again everyone. Thank you so much for the prayers, support, and good wishes for our little girl. All of your notes have meant so much in these last days. I haven't had the energy to post much, but I do come and read comments a lot.
First, I wanted to respond to "Wishing4ababy"'s kind heads-up regarding the Children's Hospital of Philadelphia (CHOP) and fetal surgery. Nowadays, CHOP offers fetal surgery for spina bifida only in the context of the MOMS study that I wrote about before. I am working with the coordinator of the MOMS study to see if we qualify, and if we do and are selected for surgery, we would go to CHOP.
However, I had a special ultrasound yesterday to see where my placenta is located, because placenta previa is an exclusionary criterion for the study. It turns out that right now, I have a partial placenta previa, which means my placenta is partially covering my cervix. Today, my results will be sent to the coordinator of the MOMS study, and she will send them to the surgeons in Philadelphia who will make the ruling of whether we can participate in the study based on this problem. I should know sometime today, or Monday at the latest.
My husband and I are resigned to not getting in to the study. The doctors want only low-risk pregnancies in the study, so that if a baby were to be born early or suffer other complications, they could be reasonably sure it was due to the surgery and not to placenta previa or some other condition. I guess our only other option is to explore having the surgery in another country, and I have not done any work on that as yet.
Of course we were concerned by the placenta previa itself. I did not know that I was at such high risk for this condition, but it turns out that older mothers with fibroids and previous uterine surgeries such as myomectomy and D&C (that's me) are at increased risk for placenta previa. If it does not clear up, there's a risk of premature birth and serious bleeding as the pregnancy progresses.
I was surprised that our perinatologist and OB were not more concerned, but when I read more I learned that 90% of the time, placenta previa diagnosed in the first or second trimester resolves itself as the pregnancy progresses. That is because, as the uterus increases in size, the implanted placenta is pulled into a new position, often away from the cervix. Even if my placenta previa persists, as long as there's no bleeding the only complication will be a c-section delivery. I will have that anyway for my spina bifida baby because they don't want to traumatize her spine with a vaginal delivery. My only restrictions right now are no sex, and no high-intensity exercise.
On the plus side, we had an MRI of the baby this week and there were some positive results. Her diagnosis of myelomeningocele was confirmed, but I must have misunderstood the doctor after the ultrasound because they now say that her hydrocephalus is "mild." Also, her brain development is normal. This means that if the fluid pressure in her head does not get much worse during pregnancy, she has a very good chance of avoiding brain damage. Also, they saw that her spinal cord is not tethered. That is a condition where the spinal cord gets stuck at the site of the deformity. When that happens, even more damage is done to the nerves because the cord can't move as the baby grows. Our baby still has the damage of the myelomeningocele itself, and we won't know how bad that is until she is born. But the lack of cord tethering at this point is good news.
The MRI took 40 minutes longer than the normal one hour -- my legs were numb from lying on my side all that time! -- and when they took me out of the machine the radiologist apologized and said, "You have a very squirmy baby! She wouldn't hold still to have her picture taken." I was happy to hear she's still vigorously moving her legs.
Also, we received preliminary results of the amniocentesis, and so far our baby is chromosomally normal. We'll receive the full report sometime next week, when we will also have a series of appointments at Children's Hospital to learn about the treatment she will receive for spina bifida. The MRI was at Children's and I must admit that I was very sad that morning as we walked by so many sick children and their exhausted, hollow-eyed parents. I said to my husband, "This is the first trip of hundreds we will make to this hospital." However the staff was upbeat and very kind; they even gave me a yummy boxed lunch because I wasn't allowed to eat before the MRI.
There is such a bewildering amount to learn about how to care for our daughter, and some days it is overwhelming and I cry a lot. But I have had some wonderful emails from spina bifida parents and even spina bifida sufferers. Nearly all of them begin their email or post with, "Congratulations on your baby girl!" And I guess that is where my focus should be -- on my daughter, and not her disease.
Thanks again for all the support and prayers.