A little about us

[Kat]

My name is Kathryn and I am a stay at home Mom to a 3 year old, Dylan, and an almost 7 week old, Devin. Devin was diagnosed with Spina Bifida upon delivery. We had no idea that our baby was not going to be healthy. We had no risk factors, all of my prenatal tests came back normal and most importantly I was taking folic acid when I got pregnant. I am a rule follower and did everything I could to insure that I had a healthy baby, and I didn't get one. I am still in shock, and a little sad that my baby has these health issues. I love him to death and wouldn't trade him for the world, I just wish that he didn't have Spina Bifida.

[kidsrustx]

Welcome to the board! It's a great place to get support. Did Devan have the open or closed form of Spina Bifida? If open how did his closure surgery go?

[Dodger67]

Hi Kathryn
Welcome! :happy065:

[n3rdchik]

Welcome! And Congratulations on your new little guy!

My son, Sagan, was diagnosed at birth with a closed form of spina bifida. I understand your surprise, worry and grief. Though, it is a mixed blessing - several people here that were diagnosed prenatally were only given worst case scenarios and pressured to terminate. We were spared that. This is a great site - no only do you meet happy kids and accomplished adults with SB - you get great advice and support.

Welcome!

[LisaJoy]

Welcome, Kathryn! Glad you found us.

[babybsmom]

Welcome Kathryn,

I'm glad you found the site! It has helped me tremendously! I hope thigs are going well for you!

By the way, this is Brian's mom. Call or write if you ever need anything.

Gwenn:happy065:

[Kari]

Welcome!!

I think you'll find that many of us have been through similar situations. While Zach was diagnosed in utero, he was a planned pregnancy and I had taken folic acid a full hear before becoming pg with him. It's hard when you feel like you did everything "right" and you have a sweet baby that has to go through so much.

How is he doing now?

[Amnada]

Welcome Kathryn,
We were diagnosed when I was pregnant, and we were able to prepare ourselves for a child with spina bifida. You will find this site very supportive with people who have been where you are.
I hope you can find some answers and comfort from our experiences and the stories of parents, children and adults.

[Jill]

Hi, welcome! Congratulations on your new baby!
My son was diagnosed prenatally as well. We didn't have any of the risk factors and took folic acid... there are times when I wish we DID have a risk factor or I didn't take FA, just so I could have a reason for him having it. We all know what you mean about loving your son, but hating the SB. Hope you can get some support here!

[XoBLoNDiE85]

Welcome! You will find great support here as well as wonderful advice!!

[valerie]

Welcome to the site.... i too was in your position 2 years ago, we went into hospital dying to see our baby and little did we know what was about to happen. Cian was born by C Section and i instantly felt something wasnt right and those words i will never forget so i know exactly how you are feeling... its such a shock and its so hard... 2 years on and he is doing really well.... been through a lot... i too was on the folic acid, healthy etc.... i hate saying it but its true its just one of things... not an easy thing to live with but time does help... i still have days and my heart will never stop breaking for my little boy but he is an inspiration and has changed us for the better in so many ways... i am now 27 weeks pregnant on baby number 2.... so life still goes on... hang in there and try and get as much information as u can as knowledge is the key.... Fill us in on little Devin... where's he legion etc... how is he doing... feel free to private message me anytime... hang in there.... things do come good...

[Kat]

Welcome to the board! It's a great place to get support. Did Devan have the open or closed form of Spina Bifida? If open how did his closure surgery go?

Devin's Spina Bifida was open, his surgery went very well. His incision on his back looks much better than my c-section incision. It must be that new baby skin that makes it heal so pretty!