Congenital Hydrocephalus

Hello,

I want to share my baby daughter's story, Tiffanie Chanel. She was born with congenital hydrocephalus at 38 weeks gestation. I remember the day I found out something was wrong, I was 22 weeks pregnant and awaiting the results of her gender. I was so excited, I had waited years to have a baby. During the ultrasound the tech called in the doctor and they spent a long time looking over the pictures, I didn't think anything of it until the doctor looked at me and said "your baby has hydrocephalus" I didn't know what that meant, but she went on to say that it was very severe and there is nothing we can do. I asked what hydrocephalus was and she told me what it is, and then said it would severely impair her ability at a neurological level to the point where she could at worse be a vegetable, and she reminded me how severe it was and I should come to terms with an abortion. At this point I lost it. It was the worst day of my life.
I decided to love and keep her no matter what, and I did research when I got home and realized that babies with this condition do live happy normal lives. She was born by c-section. Her head circumference was 52 cm, and her ventricles measured 52 and 33. She was a big girl regardless of her head size. She was shunted at two days old, and we later found out she had a mal-rotation of her intestines which she had surgery for as well. All throughout the pregnancy, the ultrasound showed her heart was at the wrong side of her body and we were told she would need heart surgery as well. When she was born, her heart surprisingly was positioned  at the correct side and was functioning perfectly. Thank God! Two surgeries were enough. The doctors told us she would not feed due to the shunt and would need a feeding tube, but she needed one through her stomach anyway due to intestinal surgery. Docs said she would not nipple, but she did fine. She never acted like a hydrocephalus baby. She was sent home with feeding tube, but I knew my baby could nipple so I went home and tried and she did great. I never fed her through her tube. She stayed six weeks in NICU. Most babies stay in the NICU because they cannot feed by mouth due to shunt surgery. If she had not had the intestinal mal-rotation, she would have been home sooner because she was taking the bottle fine

www.fetalhydrocephalus.com

She has been home and she is so smart. Docs said she would be cognitively delayed. I do not think so. I found a site about people with congenital hydrocephalus that test at genius IQ, and I think my daughter is smart. She is two months old and can function fine. I show her slides on my laptop and as I click for the next slide, she tries to also. The only delay she has is holding her head up, but she is alert and happy. She follows along during story time and has not had any delays, and even seems to be meeting some milestones early, and to think the doc said to abort because she would not have a good quality of life. If you think about it we only use a small percent of our brains, it is not how big your brain is, it is how you use it. I do worry from time to time, but whatever happens we will get through it, and it is not as bad as the docs put it. If I knew than what I know now, I would have not spent all those days and night crying and worrying. I will keep you posted throughout our journey.