Sunday, July 01, 2007

An Appeal

It's been a rollercoaster of a week. Wednesday we went in for our 20-week ultrasound all ready to find out whether it's a boy or a girl. What the doctors told us instead was that our baby -- a girl, incidentally -- has spina bifida.

Spina bifida is a neural tube defect. It occurs when the spine doesn't close properly over the spinal cord. This results in all sorts of damage, anything from major paralysis and brain damage to, well, maybe no damage at all. It all depends upon just about a million factors, such as how low on the spine the problem is, whether the spinal cord itself is involved, whether it's exposed to the amniotic fluid.... You get the drift.

So, Wednesday sucked hard. It didn't help that the doctor who did the diagnosis suffered, in DH's words, from a serious case of hubris. This doctor, who shall remain nameless, basically said, "You can go for a second opinion if you want, but any other doctor will agree with me." He then told us we had a week to arrange to terminate the pregnancy.

Needless to say, we went for a second opinion. We were supremely lucky to get referred to Columbia-Presbyterian Hospital. The staff there is top-notch, everyone from the doctors to the "customer care coordinator" to the person who does all the fiddly insurance stuff. Kind, caring and totally, one-hundred-and-ten-percent professional all the way.

They squeezed us in for an ultrasound on Friday morning, and that doctor -- who suffered from no hubris at all -- said it could be one of two things: spina bifida (which he tended to think was probably the case) or something called a sacral-coccygeal teratoma -- basically, a benign tumor that carries its own potential problems, such as the potential to grow large enough to suck too many nutrients from the fetus and cause damage in utero. At least this doctor, Dr. R, gave us specifics: the mass is 1.9cm and located in the sacral area of the spine, vertebra S1 or below. This is far more than Dr Hubris even bothered to write up in his report, which was so vague that a friend of ours who (luckily!) just happens to be a well-respected pediatric neurologist, and who we showed that first report to as soon as we heard the news, basically said she couldn't tell us anything at all from it.

So, here's where we stand. Wednesday we pretty much heard a death sentence for our little girl. Thursday after consulting both our friend the pediatric neurologist and a pediatric neurologist recommended by Baby M's pediatrician, we heard some of the potential things that could be wrong with a baby with spina bifida. Awful, awful, awful. Crying, heartsick, awful days. Friday we took the second ultrasound plus an amnio, something I'd avoided because of the risk of miscarriage it poses, but now a necessity to make sure there's no chromosomal abnormality that may be the cause of (or simply another problem to go along with) the visible mass. And we gained back some hope. Maybe it isn't as black as it sounded at first. Tuesday I'm scheduled for a fetal MRI, which is probably the best chance we have of finding out if this is definitely spina bifida, and if so, how serious it may be. In our advantage are the facts that it seems relatively low on the spine, there's no indication of anything wrong in the baby's cerebellum, and so far at least, it looks like whatever's inside that mass isn't in contact with the amniotic fluid (doctors know there's a connection between contact with the amniotic fluid and damage to the nerves in the spinal cord, they just don't know why). Dr R basically said we could have a baby with problems...or we could have a baby who gets operated on at birth and shows no aftereffects at all. And much as all these tests can tell us, what they can't do is guarantee anything at all. It's all a guess, albeit a more informed one.

Spina bifida is a one-in-a-thousand thing and doctors don't even really understand what causes it, although they suspect some combination of genetic predisposition plus environmental factors. It just goes to show you can do everything right -- take the prenatal vitamins, not drink, smoke, do drugs -- and still something completely unexpected and horrible can happen.

So, here's my appeal. Please put in a good word for us, for our little girl, with the higher power of your choice. If you're not a higher-power type, please just send us some good thoughts and wishes. We're hoping to hear good news, or at least the best news possible under the circumstances, in the next few days. Please keep your fingers crossed that we do.


Dani said...

I am sorry to hear you've had to deal with all this, and that in the midst of your own personal issues, you had a dr with the bedside manner of an axe murderer. I'm glad you have a family friend who can guide you and that your second opinion Dr seems to have all the caring and kindness any parent to be needs by their side during what could be rocky roads ahead.

Sending healthy, healing, comforting thoughts for you, your precious little girl and the rest of your family to see you through all this. *hugs*

Ren said...

oh, linda, i'm so sorry! i will certainly keep you, your little girl, and your family in my prayers. *hugs* i hope that you get the results that you're hoping for.

Mariel said...

You and your family will have all of my best wishes and thoughts. I am so sorry for the stress you must be feeling but I will hope for nothing but the best for you.

Jeremy said...

Linda, you and your family will be in my prayers and thoughts. I am sorry you have to go through this at a time that is supposed to be filled with happiness and hope.

Julie McC. said...

I have been on the "there's something wrong with the baby" ride. My son is 17 now. Sometimes a birth defect is a different, unexpected gift. A hard one. I know. .