Hi Everyone

Misty - posted on 03/28/2010

I think that my son has the same as your little girl he had is back closed before he was 24 hr old and his shunt was put in on April 11, 2008 and believe me i know what you mean bout the scares.. his shunt stopped work bout a month after he got it..he has been thur 4 surgeries snice he was born.. if want to talk more just hit me up on facebook. hope to hear from you soon

Jenny - posted on 06/15/2009

Hello, my name is Jenny, i have a 6 month old daughter, Loralei, she also had spina bifida, i believe L3/L4 level, i found out when i had my 1st ultrasound, i was devastated, i did not know if i would be able to handle this. Now i look back and i don't know what i would do without her. I had a scheduled c-section on december 18th, 2008, she was a surprise, i didn't find out what i was having, i thought for sure it was a boy!, she was shown to me from across the room and taken to childrens hospital, she had surgery the next day, she had her back closed and a shunt put in, that was the longest day of my life, i just wanted to be with her but i was not allowed to leave the hospital as i was supposed to be recovering, i went to see her that night, i was so sad, i couldn't hold her, she had tubes everywhere. She was the biggest baby in the NICU, she was 9lb 3 oz. she did very well, took her home in 10 days, knock on wood everything is going pretty well so far, she is always so HAPPY, i wouldn't trade her for anything!!! she is my everything.

Lisa - posted on 04/06/2009

Hi Ali, My name is Lisa. I have a 27 year old son with SB. I must say today there are so many advances in treatment that we didn't have back in 1981.  and how wonderful that is. My son is now working on his Phd. in New Orleans. They grow up so fast it just seems like yesterday that he was starting to walk( which back then we were told he would never do) I hope things continue to go well for you.  But just weather any backsets and continue forward. Lyndon has atrophy in his left leg, loss of muscle control in his right, and incontinence but we were lucky that we never had to have a shunt. If you raise your beautiful daughter to realize that she can accomplish anything it just might have to be in a different way you cannot go wrong. Let me know if I can be of any help! Good luck and may God Bless.

Angela - posted on 02/18/2009

Hi Everyone,

My name is Angela and our son Dillon was born July 15th, 2008 with Myelomeningocele (L4-S1)  It was not detected in any of the ultrasounds that we had so it was quite a shock when we he was first born to find this out.  He was immediately transferred to a children's hospital about an hour away from where we live, and had his back closed up about 26 hours after birth.  He had a vp shunt put in at 3 weeks old, and quickly recovered from that surgery so he was able to come home at 4  weeks old - which was probably one of the happiest days of our lives when we were able to bring him home to be with us and his big brother.

We don't have any definite information about his bowels/bladder as of yet.  He has gone through a few tests and right now the only definite thing that they are diagnosing him with is urinary reflux.  He also had hip dysplasia at birth due to the fact that he was in frank breach position (his feet were up at his ears) so he had to wear a really cute hip harness that held his feet up in frog position for 6 weeks full time and 6 weeks 12 hours a day - the hip dysplasia has been completely cleared though!
And last but not least he has a chiari II malformation, which at this point we have seen absolutely no signs of, so it's promising that he will hopefully never need any surgery to correct that.

I really couldn't ask for a better baby.  He has the most amazing temperment, and already has a fantastic sense of humour.  He is one of the happiest little babies that I have ever seen.  I believe that his wonderful personality will stick with him throughout his life and will only make any obstacles that he may be challenged with easier.  We have been and will continue to only have postive thoughts about any news that we recieve in the future, which I think with only help him throughout his life as well.  He is a very special little boy.

I am very grateful to find a group like this where we can all share our experiences.  As much as other people try to help with the day to day ups and downs of the emotions it is very difficult for them to really understand what we're going through.  I appreciate all of the listening ears that I have supporting me and my family more than I could ever express to each of them.   But I also look forward to hearing others very inspiring, uplifting and postive stories, and of course sharing and trying to help others through their hard times.

I hope to chat with each of your more throughout the years!

Ang

Nicole - posted on 02/03/2009

Hi Ali! My name is Nicole. I too have a daughter with SB her name is MIa. She was born on November 14th, 2008. She is L2 to S2 and had a shunt placed 5 days after birth. Our girls really have alot in common! I was actually wondering where your daughter goes for clinic, We are from the MIlwaukee area and go to Children's Hospital of Wisconsin, We have been less than impressed with our service there and have been asking around about where else we can go. We have been told that the Shriners Hospital there is really good,

Samantha - posted on 01/03/2009

Wow! This is such a great site. I looked all over the internet when we were pregnant with our little one and found out that he had SB and really could not find anything like this. This is exactly what I was looking for. Real stories with real info from mom's who have gone through it.

My little guy was born on March 19, 2007 with SB and hydrocephalus. He had back closure surgery 24 hours after birth and vp shunt placement at 2 weeks old. He is now 22 months old and is doing really well. He is walking/running all over the place and is really funny little guy. At his last urology appt. the Doctor even called him a freak of nature because of how well he is doing. We just hope things will continue to go this well. We have heard stories that as he grows things could change or he could have scar tissue to build up and make things change. We will be ready and just deal with things as they come. So far his shunt hasn't given us any trouble either. That was probably one of the hardest things for me to adjust to. I was always worried that his shunt would malfunction and we wouldn't know it. Sounds silly to me now. From what I have been told, we will know if it breaks.

You guys are so right about SB children having a special "light" about them. I would not trade him for the world. I have 3 other children that are also wonderful and are the best siblings to their little brother. We feel very blessed to have Owen in our family. He already is full of so much love and makes us all laugh everyday.

April - posted on 01/01/2009

Hi Ali,



My name is April Kennedy. Our son, Blake, was born July 2, 2002 with SB (L5-S1). He also had back closure surgery within 24 hours after birth....we were not at the hospital at the time of surgery...he had been transported out from our local hospital to UCSF, but we OK'd the surgery to go forward over the phone. That was hard. But the surgery went off without a hitch and doctor told us that our little boy would probably walk and run!



Blake is a very high-function SB child with no shunt. He walks, runs, bikes, hops at this time with no leg bracing....although wore AFOs until about a year ago. We cath him every 3-5 hours and have done so since birth. I am desperately attempting a bowel program at this time (he is 6 years old now and in kindergarten...and I can no longer ignore it...something I have found that I do every once in awhile...probably coping skills). It is one of my New Year's Resolution. I cried on and off for the first two years of Blake's life worrying about all the "what ifs" and worried what the future would hold for him. Life finally became "normal" for our family and I too feel the same way as Ali....I wouldn't trade him for anything...we often say "we would take him again in a heartbeat the same way God sent him to us in the first place." We have an older daughter who is just as special as Blake. She, too, was sent to our family for special reasons....to be a great big sis to Blake and we are grateful!



I keep a family blog where I am very open and honest about what it is like raising a child with special needs. I have posted his birth story there on the blog as well as what a week in the life of our family raising a child with special needs is like. We laugh a lot as a family about our special situations and it helps keep us light and happy! My blog can be found at www.4kennedys.blogspot.com and his birth story can be found around the last week of October 2008. I did it in honor of Spina Bifida Awareness month. Please go check it out. Dave and I searched high and low to find a book or something that would give us a glimpse as to what it might be like to raise a child with SB and we found nothing....only clinical books. My blog is real life writings. And it isn't all about SB...but usually weekly something is mentioned....it's just part of our life. One day...I hope to put a little book together of inspiration, struggles and funny stories of what is like raising one of these very special kids!



Please feel free to ask any questions too....as you will see from my blog...I don't hold much back. We all have so much to learn from each other's experiences. If they aren't shared....we can't learn! Good luck with Kenidee! Love her name, by the way...if our last name wasn't Kennedy....we definitely would have had a little girl named kennedy or kenzie....we had to go with Kaia instead...but we love it just the same!