Friday, August 05, 2005

Lots of test results

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.


Anonymous said...

Still praying and hoping everything goes well. I wish you didn't have to go through this. It's so fu**ing unfair.

Teendoc said...

Do you want me to see what I can do about having Dr. Adzick see you at CHOP (not CHOPS)? Working as a fellow attending physician there for 12 years should count for something.

E-mail me and I'll ask him if you'd like.

Amy Linder said...

Hi Bee -

So good to hear that your little girl's hydrocephelus is mild. Bodes well for her, I'm sure. Love to read your updates and anxious to hear how things are going for you, your husband and baby girl. Please remember that I am always here if you have anymore questions, concerns or just want to talk.

Take care.

Amy :)

Anonymous said...


I just know things are going to work out,its already starting, your little angel doesn't have it as bad as you first believed. You and DH be guarded and let the rest of us be optimistic for you. Glad you are working with CHOP, I truly believe that you will be able to get in there. I used to work at HUP, so I am a little familar with the people who work at CHOP, they are very special people.

If I can do anything for you when you come to CHOP, don't know if you live around the area, but if you need someone or something, you know where to find me, don't hestitate to ask.

God be with you.

Anonymous said...

It sounds as if your little girl is a fighter and doing so much better than you originally thought. I am going to chalk it up to all those powerful positive thoughts beaming to her all of the time now...

I also wanted to tell you that I had placent previa- almost complete at 20 weeks. It had pulled up a little by 23 weeks and pulled up completely by 26 weeks, although it was still low-lying. I was on bedrest but for pre-eclampsia and I never had any bleeding or complications from it.

So many ladies on the board have had this and had it pull up- I will keep my fingers crossed that you and the little one qualify for the study.


chris said...

Glad to see you updated. I've been thinking of you and your little girl a lot. It sounds like you got some good news in all of this. Here's hoping for more.

Take care.

Anonymous said...

I was born with myelomeningocele (spina bifida), and have tethered spinal cord. The doctors told my parents I would never live. Then they told them I would never walk, and I would be "retarded". In my case, I am fully ambulatory. I have a wonderful life, work for a nonprofit, am working on a graduate degree, and love every moment of life! There certainly have been difficulties, and several surgeries, but I wouldn't trade my life for anything. I have learned so much! I don't define myself as "suffering from spina bifida". I am a person who happens to have spina bifida. There is much more to my life. It has been an incredible journey, and I am not done yet! And there have been so many advances in medicine since I was born. I don't think they can ever know for sure how things will turn out, so please do not give up-There is always hope!

webhill said...

Hey, Bee -
I used to work with Dr. Adzick YEARS ago when he was at UCSF doing research on sheep. Not that he would know who I am, I was one of the veterinary nurses who took care of his sheep. He was doing fetal surgeries on them, studying this very problem. I remember when he moved from UCSF to CHOP, because I also moved from SF to Philadelphia to attend veterinary school in Philly. If you do get into the study, you should know he has been working on this problem for a long time, and has done really amazing stuff. Best of luck.

Anonymous said...

I just read part of your blog about your baby having Spina Bifida. I am a 27-year-old woman with Spina Bifida and I can assure that while your child's life will have certain challenges, it can be a full, rich life. I know that having a baby with a birth defect is not what you had planned, but I believe everything happens for a reason. There is a reason that this baby is being given to you and your husband. I don't know if you feel comfortable with this, but can I make a suggestion? Whenever my parents learned of a family who discovered they were expecting a child with Spina Bifida, my parents would buy the family the James Dobson book "When God Doesn't Make Sense." I have yet to read it but from what I understand, it helps deal with the process. I would also invite you to take a look at my personal Web site. It shows that a person can be successful AND be severely disabled. The addy is:

God Bless,

Anonymous said...

I just wanted to tell you a story that may give you hope. Several years ago, I did ballroom dancing as a hobby, and my dance partner was a very handsome, intelligent, and talented young man. We got to talking once, and he said he had been born with spina bifida. My jaw about dropped to the floor. This guy was about the most agile person I've ever known! I didn't learn details about his condition, but he did say "had a few mild problems" as a child, but was able to overcome them. And how! I don't dance anymore, but I know this young man is now managing a well-known dance studio and is very respected in the ballroom dancing world. Pretty amazing!

Anonymous said...

Sending lots of good thoughts to you and your little girl. I hope somehow, you can get into that study. I'm so happy there was at least some postitive news. Hang in there.

Anonymous said...

Just sending my prayers and wishes along again. I think of you so often .. and send you as much strength as possible. I live in a suburb of Philly (as you probably remember) and can help you, should you need anything at all. You are a special person .. and your daughter is very lucky to be born into your love and guidance.

My love and support, my friend.
Megan (from the DE Board)

Anonymous said...

Dear Bee,

Thank you for posting this update. I am so happy to hear that you received some good news. Your little girl seems so feisty.

I think of you alot and I will continue to keep you and your family in my prayers.


Anonymous said...

I, too, had a baby with spina bifida. I found out when I was 5 months pregnant. My husband and I were considering the MOMs study but after much soul searching we decided against it. My son was born on christmas eve of 2004 and he has already proven a lot of doctors wrong. Have faith and just know that every thing happens for a reason and God doesn't give us more than we can handle.

J's Mommy