New to Spina Bifida

[starzsmile]

My name is Star, and I am 5 months pregnant, and just found out that my new little boy has spina bifida. I don't know the extent of it, but am very scared. I would like to find out all I can about it, so when he is born I have the tools to help him live the best life possible. Any information, suggestions, or feelings you would be willing to share would be greatly appreciated.

Did you have a hard time knowing that your new baby would be disabled? I just found out 3 days ago, and have spent a whole lot of time crying. How did you come to terms with it?

Thank you for your time.

Sincerley,

Star

[Dodger67]

Hello Star
Welcome to the forum:happy065:
Browse around the topics, you will find a lot of posts relevant to your situation. Please feel free to also post any questions, comments, rants, whatever and we (everyone here) will do our best to respond.

Just to let you know that SB doesn't have to be a huge tragedy - I'm a 40 year old male South African with SB, I am a fulltime wheelchair user and I am self-employed as an IT consultant.

[catlover]

Hello,
I am 29 years old and I have SB. I am able to walk, however, I did spend a lot of time in the hospital as a child. My only advice I can give you is treat your child as a normal child. They have just as many opportunites as anyone else. My parents were wonderful. They always encouraged me to try and do anything. They did have to protect me from people who tried to hold me back but stay confident and always encourage your child to be their best. SB is only a disability if you make it one.
My parents didn't know until I was born that I had SB. They were really upset at first but they surrounded themselves with family and friends. I am positve that you will be a great mother. When your child is born feel free to contact me. I would be happy to answer any questions you may have. Since I have been through the process I am aware that it can be very stressful.
Keep in touch!

[angel]

Hi,

I am 31 years old and i have SB myleo. Life with sb can be wonderful. The saying life is what you make it is very true.
I also have to agree with the earlier advice of raising this child as you would if he/she didn't have sb. I was raised just like my brothers and sisters. No one felt sorry for me and expected everything of me that they did if them.
Now i am grown with a husband and children of my own. I run my own business, my husband is very successful in his career. My boys will be going into middle school this year. As you will see from a lot of the people on this board that have SB our lives turn out just fine!! I hope that helps a little.

Angel

[smoop]

Star,
Totally understand how you're feeling right now. I found out during my 18 week ultrasound and was completely shocked. I spent a whole lot of time crying during that the first week. I remember the words "spina bifida" playing over and over in my mind.

My daughter is now 3 years old. I was told she'd be L1-2, have clubbed feet, and hydro during u/s. She did not have clubbed feet and her level is actually around L3-4 instead. She is doing great and is the biggest blessing to us! She walks with long braces & walker but mostly chooses to crawl around. Her first year of life I was very focused on the disability but that started to dissipate as she got older. SB is just a part of her.. it does not define her. Sure, there are hardships but you just deal with them. I do struggle with people commenting and staring at her lately (mostly kids because they're curious) but I'm learning how to deal with that too.

Hang in there.. feel free to email me privately if you need.
~Renee

[Bigwilli]

Hi Starz,

We just had our baby girl and I can say it does get better. We were devasted at first but I educated myself and through this group discovered a whole new world out there. Is it all easy? No, but it's definately not the end of the world. Our baby is healthy and beautifull and I would have it no other way. Let me know if I can answer specific questions.

[angel]

I have myleo myself and my son has SB occulta. I didn't find out till he was born that there was a problem. They did every test known to man on me to make sure he didn't have it and they all showed that he didn't. It was familiar to me because i have it so at the risk of sounding cold hearted i didn't sweat it to much when i found out he did because i knew he would be fine and we would deal with whatever came.
Let me share with you the time they thought he had diabeties. I FLIPPED OUT!!!! I cried, i worried, i felt like OMG how can he live like that. Sounds stupid to me now but i was worried because i knew NOTHING about it. But my concern kicked me into action to learn all i could. He didn't have it which was a relief but by the time i found that out i had decided that we would deal with it if it came our way.
It is all unknown and new to you, but you will be fine, your baby will be fine and you will enjoy that child forever!!!

Angel

[XoBLoNDiE85]

Hi Star! My name is Laura. We just had our baby girl Hannah July 10th! Like you have heard from the other replys it DOES get easier. You will stlll have down days yes, but everything will be ok! Search my posts and you will see i was flipped out but trust me it all turns out out ok and before you know you r home with your baby looking and thinking back saying to yourself "how did we make it thru all that" Hannah is about 3 1/2 weeks and such a blessing to us and her 2 older sisters! Good Luck and keep me posted!

[SBGrandma]

Hello Star. My daughter gave birth in June to our first grandson, who was born with spina bifida. His condition did not show up until his hydrocephalus appeared on an MRI a week before he was due. She learned of his condition moments after the emergency caesarian birth. The worst part, aside from no forewarning, was having her new baby zipped off into the night by ambulance to a hospital with a neonatal intensive care unit (NICU) three hours away. Her husband and mother in law followed the ambulance, and I stayed with her. Well, maybe the worst part was her anxiety as she waited through his surgery the next day. Once she was reunited with him three days later, just the sight of him made her begin to smile and to heal.

My daughter and her son were surrounded with caring professionals who gave him superb care, and taught her the skills she needs to care for him. His neurosurgeon waited until the stitches healed over the lesion before inserting the shunt to relieve the hydrocephalus. It sounds scary, but really isn't. We were praying for the shunt and filled with joy after the procedure was completed. My grandson was sent home just 4 days after the shunt procedure, at the ripe old age of 34 days. He has good hip and knee movement, and some foot movement. We have been told it will be months before they determine how strong his ankles, feet and calves will be. At worst, he'll need short braces. That's not a bad tradeoff for such a wonderful son and grandson!

Relax and enjoy your pregnancy and celebrate your son's precious life. The rest is just details, and not more than you or he can manage. Your hospital will give you tons of information and link you with other professionals and services. Your son will have quite a team working on his behalf, and you won't be alone.