Monday, August 01, 2005

People are lovely

Hello again everyone. I wrote before that my previous post would be my last, but I simply had to respond to the outpouring of love and support you have showered on me, my husband, and my daughter. People are lovely. "Thank you" is pale and inadequate for what I feel...but I must say it. Thank you. Thank you so much.

I see from the comments that in my hysteria, I was somewhat confusing last time about our daughter's diagnosis. Malka has the right of it: The quad-screen blood test is not diagnostic of spina bifida or any abnormality. All it can tell you is whether, based on the substances in the mother's blood, there is an increased chance of a problem in the baby. My test revealed a 1-in-14 chance of neural tube defect. Those odds are much higher than normal for a 27-year-old egg. Had I known that going in to the Level II ultrasound, I would have had some warning of what was to come, but since the results came back after I was already having the ultrasound, we were stunned.

There is no doubt that our girl has spina bifida. Even Bill and I, watching the ultrasound screen, could see the bulge of the myelomeningocele on her spine. And there was something subtly off about her head. To use a cruel but visually descriptive word, it's rather a conehead. Not so grossly deformed, yet, that we could spot it on the first ultrasound with our layman's eyes, but after we were told she had the hydrocephalus that accompanies spina bifida, we could see it.

You all know what a champion worrier I am. I worried about my blood pressure, my uterine fibroid, diabetes, pre-eclampsia, and anything else suggested by the Internet that might complicate a 40-year-old's pregnancy. But the possibility of a birth defect never crossed my mind. After the death of my first two babies last year from chromosomal problems, I made the difficult decision to sacrifice my genetic link. And in my mind, I had a binding contract with God: Hey. You up there. Are you watching this? I'm giving up on my crappy eggs and I won't be screaming prayers at you anymore for a genetic child. Now for that, I get a healthy baby, right? Even-Steven. Let's shake on it.

Now I feel betrayed, although there's nobody to blame except my own naivete. God never promised me a thing.

And yet, I don't want to scare any woman out there who is considering donor egg. This is a statistical nightmare, nothing else. I don't have all the facts and figures and wouldn't know what to do with them mathematically if I did...but I know that in the U.S., spina bifida children account for only 1 out of every 1000 - 2000 births. If some smartypants out there could cross that with the tiny number of donor egg births each year, what are the odds that a donor egg baby turns out to have spina bifida? It has to be somewhere around the likelihood of getting struck by lightning, hit with a falling coconut, and bitten by a shark all at the same time. So please, if you are considering DE, doing a DE cycle, or pregnant with a DE baby, don't let what happened to me and my daughter frighten you. Take your folic acid every day, and rest easy. Or at least, worry about something else.

A few of you have asked what is next for us. Last Friday we had an amniocentesis to determine if there is anything else wrong with our baby besides her spina bifida. The perinatologist told us, "Frankly, I do not expect to find anything bad on this test." He didn't say, but I took that to mean that he had spent a long time looking at her organs and her limbs on the ultrasound, and didn't see any other cause for alarm. The amnio results will take about 10 days to come back.

Meanwhile, we will at some point -- when they finally condescend to quit yanking us and set some firm appointments, grrrr -- go to our local Children's Hospital and have a battery of tests, including an MRI of the baby. Possibly that will provide more specific information about her condition. After all the testing is done, we will meet with doctors and genetic counselors who will hopefully make some better predictions about her prognosis and "give us our options." A friend who has gone through something similar (though her baby, thank God, turned out to be entirely normal) warned me that this is a painful euphemism for the abortion hard-sell and worst-case scenarios we will encounter at the hospital. I'm bracing myself.

But what I am hoping for is some guidance. I want them to tell me something like, "With stats like your daughter's, 80% of children will be mildly retarded but will eventually walk," or something like that. All we have been told so far is that with her lesion at the L4 vertebra, she is likely to have problems with bowel and bladder control but will not be fully paralyzed in her legs. Given that she has hydrocephalus and Chiari II malformation of the brain, the outlook for brain damage is more uncertain, and I can't find much on the Internet to guide me. After she's born, shunt surgery will relieve the pressure, and the perinatologist said that if the fluid in her head becomes no worse during the pregnancy, it will be a "good sign." But the truth is, the damage to each particular child is very unpredictable, because no one knows which of the exposed nerves is being damaged until after the baby is born and her development can be monitored.

There is also the possibility of experimental in-utero surgery. Doctors who observe spina bifida children on ultrasound have noticed that early in pregnancy, their legs can be seen to kick. And then, as the pregnancy progresses, their legs stop kicking. This argues that nerve damage is progressive and if the exposed nerves could be covered up before birth, some damage could be avoided. Nothing can heal the damage already done to her, but if we could get the surgery, she might function at a much higher level. Even better, in some children who've had the surgery, the Chiari II brain malformation has reversed, and the progression of hydrocephalus is arrested. Not for all children, but some. The risk of fetal death from the surgery is 5%, but to Bill and me, it would be worth it.

They started doing these surgeries around 1997, and they used to offer it electively. However, not all children who had the surgery appeared to be helped by it. Doctors had no clear indication of whether the children who did well after surgery would have done so anyway, or had in fact seen a benefit from surgery. So all the doctors who perform the surgery have banded together and decided to do a clinical trial called the "MOMS study." They will offer surgery only to those who qualify for the trial. If accepted into the trial, a computer program randomizes each mother and baby into one of two groups: in-utero surgery to close the spinal lesion, or post-birth surgery (which is the normal treatment for a spina bifida child).

I do not think we will qualify for the clinical trial. I have looked at the inclusion/exclusion criteria on the MOMS web site and I see a few areas of concern: I have a uterine fibroid; I have type O-negative blood which argues for maternal/fetal blood incompatibility; and worst of all, the perinatologist says I have placenta previa (my placenta covers my cervix). He says this might not necessarily exclude me from the study, because the placenta extends toward the back of my body, leaving the surgeons a place to cut on the front of me. But I am still not hopeful.

Initially I thought that what I read online could not be true. Surely, if her father and I want to take the risk of surgery for our girl, they would not deny care to her because we don't meet the study criteria? But I have called the study coordinator and one of the hospitals that previously offered the surgery electively, and both told me bluntly: "If we let people have the surgery without being in the study, no one would join our study." Apparently, science is more important than my baby.

Please, if there are any spare prayers lying around at your house, ask that by some miracle we can get our girl into the study, and that we are then coin-tossed into the surgery group. I believe with all my heart that it might help her, and that if she could speak to me now, she would say, "Mommy, take the chance. Help me in every way you can."

I really think that at this point, God owes her a favor.

11 comments:

Anonymous said...

Bee,

I'm so sorry you're dealing with the awful news that your baby girl has a serious birth defect. The unfairness of this is indescribable. Please let us know how you are doing. I've never posted here before, but I have read your blog periodically for months, and I will pray for your family.

tee-tee said...

Oh Bee...

I have been meaning to e-mail you, thinking that your m/s would be gone by now, and ready for a good chat about all the things we have discussed in the past. I have been so mia and was going to the bb for an update when I logged onto your blog on accident. I was excited to see a recent post, and couldn't believe what I read.

I must have read your post about 30 times, thinking that if I read it again, I would find a different message. I stared at this darn computer in disbelief forever with tears streaming down my face. I kept asking DH what can I say? What can I possibly say that can make sense out of this?

I was so sad, and also angry. What on earth was G*d thinking? Why do these things happen to such good people? My head was such a black cloud that I left the slate empty and tried to sleep.

Well, I'm still sad, and I'm still angry, but I'm also hopeful. I'm so glad you posted again, and reading Amy and Diane's message is so inspiring. You are right. People are lovely, and you are an amazing woman Bee. Your little girl is lucky to have you as her mom. We are all here for you and your beautiful family Bee.

Much love and support,

T

Anonymous said...

Bee -

I don't know what to say except you are in my thoughts and prayers - much love coming your way.

Dana

Anonymous said...

bee, you may not remember me but we both had a m/c around the same time on the over 40 high fsh board and i have often thought of you and your courage in moving ahead with donor egg. you have a great heart and this little girl will benefit from that in the future and already has,someone i know had a severely handicapped baby who died young and she said everyone said it was for the best but she said it wasn't, that her baby brought gifts to her life she would never have known without her. i wish you strength and hope and send you love, support and prayers. gigi

Anonymous said...

Oh Bee
I have just heard and I am so very sorry. I was so happy when you became pregnant after the sadness of last year .... words cannot express how sad I am.

Hugs to you as always
Victoria

(over 40 fsh site)

Anonymous said...

Bee
I have just heard and I am so very sorry. I was so happy when you became pg earlier this yr after the sadness of 2004. Words cannot express how sad I am ....

Hugs to you as always
Teresa
(over 40 high fsh site)

Anonymous said...

Bee, delurking to say I'm so, so sorry you are going through this. And I'm so angry that these doctors are screwing around!! Be as bitchy as you have to be to get the care you need, and deserve, for you and your daughter. We'll be praying for you.

Amy Linder said...

Hi again -

Amy here. Just another message to say you're in my prayers and that I think that's AWFUL that you have to be accepted into a study to have the surgery!! I so hope that that can become a reality for you - fight all you can for it!
So glad you decided to post again. I hope you decide to keep it up all that you're able to. Obviously you have a lot of people out here who are concerned for your situation and want to know how you're doing.

Take care and stay in touch.
Amy :)

chris said...

Sending prayers your way.

Thank you for explaining all of this, by the way. You are getting a very quick education, indeed.

Hang in there, Bee.

Anonymous said...

I am so sorry to hear that your baby girl has Spina Bifida. I am hoping that you might find some inspiration on a website that I found while doing some research for a friend. It is benotafraid.net there are some success stories there for babies with all different kinds of birth anomalities and specifically Spina Bifida.
I hope that helps. My prayers are with you.

Anonymous said...

Bee,

I posted yesterday but I didn't see my post. I pray this one gets to you.

I have been thinking about you and your darling angel all day yesterday and today. I stopped feeling sorry for myself and my IF after I read you last post.

I just wanted to get this to you immediately. I don't know where you are, and I don't know if you are near Philadelphia, but Children Hospital of Philadelphia does perform fetal surgeries on Spina Bifada babies but only if under 25 weeks gestation.

Please call them ASAP, if you haven't already. I live in South Jersey and am a patient at Cooper. I hope this can help your family. God be kind to you all!

Wishing4ababy (over 40)