Friday, July 06, 2007

No Guarantees

There's only so much that medical science can tell us. Today we met for the first time with the pediatric neurosurgeon, Dr A, who read the MRI. He was the most hopeful-sounding of the doctors yet. He said this doesn't look like a typical case of spina bifida at all to him, not the kind with brain damage and all the other horrific possibilities we were first confronted with last week. He thinks instead this may be a case of a tethered spinal cord, which basically means that during formation some part of the spinal cord didn't fully detach from the surrounding skin. This condition can cause problems as the child grows, but it can be corrected surgically after birth. There's a range of potentialities: in the best case, the child could wind up with no lasting aftereffects at all; in the not-so-best-case, the child could wind up with some degree of paralysis and/or loss of bowel/bladder control. The doctor said they won't know more until our baby is actually born, but he thinks the main worries are the physical problems -- he feels that her chances of having brain damage are very slim.

And so, we wait and hope. I totally broke down in the doctor's office today, not out of sadness but because he'd confirmed the hopes I'd been holding onto these past few days. Poor guy; I don't think he could quite understand why I was crying like a baby but telling him I wasn't sad, I was happy.

I was also pretty stunned to hear him say, as we were discussing going forward with the pregnancy, that some couples wanted him to guarantee that their child would be 100% fine and healthy, and if he couldn't do that (which of course he can't in any case), they would terminate the pregnancy. DH had actually suggested that maybe the reason our first doctor had been so callous and matter-of-fact about wanting to do that with us without even getting a second opinion was because most of his patients opted to do that as soon as they heard there was a problem. I thought DH was just being cynical, but after hearing Dr A today, maybe he was right after all. I'm certainly the last person to judge someone else -- I know how agonized I was when I thought our baby would be so profoundly damaged that she would have no quality of life at all -- but it just seems sad that people would need a guarantee of a perfect baby in order to want one at all. I mean, nothing in life is guaranteed, right? Everything can look perfect but not be, just like everything can look hopeless at first glance but not be.

In any event, we've made our decision, and as DH says there's no looking back. We'll have our daughter at Columbia-Presbyterian where she can have an MRI within a day or two after she's born to find out the extent of her injury and the best way to treat it. The facilities aren't as nice as the ones near us -- shared rooms instead of private, more patients therefore (I'm sure) less personalized attention from the staff -- but the doctors are so much more knowledgeable and competent in dealing with high-risk pregnancies than our local doctors are that it will be worth it.

Now all we can do is wait and see what the tests show after our little girl is born.

And of course, we can now jump headfirst into all the fun stuff we should have been doing since last week, like picking out a beautiful name for Baby M's little sister.

6 comments:

Ren said...

i'm so glad to hear that your results were optimistic and that there is reason to hope. i will certainly continue to keep your little girl in my prayers, too.

Mariel said...

Ditto. I'll keep your family in my thoughts, and hope for the best possible outcome for you. I hope you enjoy every moment of the "fun stuff!"

Dani said...

Linda, I want you to know that this precious baby girl is very very lucky. She already has parents who treasure her, and appreciate the gift of her life and whether her issues are minimal and resolved quickly thru surgery or more impacting on her, she will never lack for love, warmth, nurturing or support.

I hope you all have a wonderful time picking out names, and having fun with all the prep stuff for her arrival.

*hugs*

-=Dani

Karen said...

Ditto to all of the above - baby girl is very lucky and very blessed to have you two as parents that love her so much! :-)

rohanknitter said...

Bless you - what a tough thing to go through. I'm glad you got some news that was so much better than at the beginning.

rita said...

no matter how much people want perfection...they get what they get. I'm so happy that things are positive for you, and that you're going to love your little girl no matter what!