New Member

[mondragonl]

Hello, I am a new mom of a beautiful baby girl with myelomeningocele SB, borderline hydrocephalus, and chiari II malformation. She is now 4 months old and her SB is estimated at the T11-T12 level with a functioning level of L1. We found out about her SB during pregnancy and were able to prepare emotionally and medically for her birth. Currently she does not have a VP shunt, but she is examined regularly for signs of increased hydrocephalus. She is doing amazingly well and is an extremely happy baby. We often have scares, and get overwhelmed with doctor visits, and seek support from other parents in the same situation.

[XoBLoNDiE85]

Hi i'm Laura, I'm due in July (Baby Hannah) We found out she had myleo and hydrocephalus around 20 weeks. What do you mean by scares....often scares....I have 2 others littles girls 4 and 1 and this totally caught me off guard....=( But i must say we are actually getting excited about having her now but when we first found out i wanted to stop time cause we were SO scared of the unknown. Well look forward to talking with you....=)

[mondragonl]

Congratulations to you on your upcoming addition to your family, baby Hannah. By often scares, I meant there are so many unknowns. Emma is our first baby, and I often research her condition, and ask frequent questions, however, the most common answer from proffessionals is there are many possibilites because all SB individuals are different, so you have to wait and see. By scares I meant all of the signs we watch out for on a daily basis that could suggest complications with her chiari type 2 malformation, or increased hydrocephalus. If Emma looks unusual or acts unusual how much of this is normal baby unusual or spina bifida red flags. By scared I meant the doctor jitters, each new doctor visit if filled with news, however it is to be determined whether this news is good or challanging. We have thus far been blessed with how amazingly well Emma is doing, she does not currently have a vP shunt, but are worried that she may need one due to her increased head circumference at her last checkup (scary). Scares are presented everytime you face any difficult decesion regarding your child and there well being, will we make the right decision, the one to benefit her the most in the future, the one that will work in cooperation with new futuristic scientific discoveries. Will my child be socially accepted, educationally challanged, and how much is her physical disability going to affect other areas of her life. How many surgies will she go through, how many challanges will she face, and can we as parents prepare her for her many challanges and make her strong, determined and happy. Those are my scares. But for some optimism our baby girl has a high level lesion, and is an extremely vibrant baby. We had no idea what to expect during pregnancy (emotional rollercoaster) but if I could have seen her today in my mind during pregnancy all of my fears and doubts would have been erased. We are very proud of our miracle baby Emma, and her progress. And it is very true that Spina Bifida is not what defines your child, your child's personality will shine and amaze you with every moment. Congratulations!!