Jill - posted on 05/08/2009 ( 9 moms have responded )
Warning...this may be long!
My husband and I already had 2 boys, and decided we wanted another baby. We got pregnant easily, and everything was looking good. I went in for the first routine ultrasound, and the tech was acting funny...so I knew something was up...but she wouldn't/couldn't tell us. When she was finished doing everything, she said she'd be right back with the Dr. He told us that our daughter has Spina Bifida...he did say it's really low on her spine (although I can't remember the exact number...it's L something!) anyway, we were set up with an appointment to see a specialist for a more in depth ultrasound. At this appointment, the specialist confirmed the Spina Bifida and said that she also has severe hydrocephalus (sp?), and that IF our daughter lived she would be a "vegetable", then she proceded to suggest to me that I terminate the pregnancy, without giving her a chance to finish her sentence, I told her that that was NOT an option for us! And due to her lacking bedside manner, and suggesting that I end my daughters life before it even begins, we never went back to her. We saw another specialist, who confirmed the Spina Bifida, but said the other doctor was wrong, she does NOT have hydrocephalus...Whew! What a relief! We continued the pregnancy with frequent ultrasounds. Delivered by scheduled c-section, 2 days later she had to have surgery to close the hole in her back and make sure the spinal cord was in place. She was in the NICU for 12 days...the LONGEST 12 days of my life! We took her to SB clinic and were doing cathiterizations on her, just as a precaution...and at 9-10 months old we found out that she also has urinary reflux. They gave us some options, and we chose to have her get a vesicostomy, which they put a hole in her bladder so her urine drains out of her belly...the hole is low enough that her diaper catches it, and she doesn't need a bag. Also when she was 1 the physical therapist found that her muscles in her lower legs/ankles weren't strong enough, so she had to get braces. She has now grown out of the braces, she's walking wonderfully! When she's 3-4 y.o. the doctors will reasses her urinary reflux...they said in some cases it corrects itself (obviously that's what we're hoping for...but not necessarily expecting), she will need a surgery to close her vesicostomy, and if the urinary reflux hasn't corrected itself she will also need another surgery to enlarge her bladder. Right now she is 2 1/2 y.o., she's been talking up a storm for over a year, she's smart as can be, walks amazingly well...and just by looking at her you would have no idea that anything is wrong with her, she loves wrestling with her big brothers, and feeding/playing with her new baby brother, she's my amazing little miracle...and I'm so glad that I wasn't willing to give up on my baby like the first specialist suggested, we would've missed out on one wonderful little girl!