Advocacy!

Every morning, I check my email and facebook as a "wake up, it's not so bad" kind of thing.... It's only 7:30am and I'm fuming and sad this morning.

A mother of a baby boy with SB shared her heartbreaking story on the forum I visit daily.  Her doctors gave her the worst case scenario, told her he'd never live a full life, that he'd be severely mentally handicapped because of his hind-brain formation, and he'd always be in a wheel chair. It's devastating news to a scared mother. And doing what they thought was right, her husband and she decided to terminate the pregnancy. After hearing your child won't ever "grow up, be normal", who wants their child to live a life of misery and pain? She held him when they took him at 22 weeks, and realized what a perfect little body he had and realized what I think, and hope, all SB mommies and daddies realize: this is still a baby, he or she is still perfect to them, and they are "normal" children. But it was too late for her little one.

And then she found the SB forum that so many mommies and daddies of children who have SB post on. You see pictures of smiling faces, stories of success, and lots and lots of REAL and TRUE information. I'm heartbroken and sad for her, finding the forum too late, because now every time she sees a healthy SB child who is functioning as well or better than a "normal" child, she's going to be forced to think about what might have been.

And THIS is why we have to advocate to all these dimwitted doctors who give ONLY the worst case scenario to families. SB has come a long way since the 50's, when the majority of babies died and/or didn't receive the proper care. I've yet to meet a mother or father who has a SB baby that is "retarded" or leading a miserable life. Doctors need to be aware of things like this forum, support groups, and the new surgeries/options that are out there. I know from experience the ridiculous things they told my family when we visited children's hospital. For instance, SB children can't live on their own as adults. Or the fact that the neurosurgeon has no plan for what to do with babies who have in utero surgery. We know why the last family who had in utero chose a difference hospital to go to after their beautiful baby was born, because the doctors are, and remain ignorant on the subject of SB and need to get with the program!

I for one will be advocating to my OB that she needs to be a little more tender with mothers who have an issue with an ultrasound, as well as sharing some information on children who lead full healthy lives with spina bifida, grow up, get married, and have super cute babies of their own. If I have the surgery, I also cannot wait to advocate to the neuro team at Children's that this is the new wave, families should have the option, and they should be informed of it by now. Get with the program, or be replaced by someone newer, younger, and more talented.

So let's not waste this woman's experience, and when someone asks you about SB, give them the truth: They have a physical issue that will be repaired one way or the other, but they're just like any other little one... Cute, cuddly, and a blessing.