If you live in North Central Indiana and are interested in meeting with other families raising children with spina bifida or if you are an adult living with spina bifida, please visit Spina Bifida Family Support for more information.
Welcome to our Journey with Spina Bifida.
This website documents our continuing journey with Spina Bifida.
It is my goal for this page to educate those parents who have discovered that their unborn child is affected with Spina Bifida and are desperately seeking information and for those parents who already have a child affected with Spina Bifida. I hope this page will ease some of the concerns you may have and provide hope for your child and yourselves as parents.
We Begin...…….
In 1991 I discovered that I was pregnant with my first child. Although it came as a shock as my husband and I were not planning on starting a family at that time, it was wonderful news to me! Me, a "MOM"! My pregnancy was going very well and I looked forward to being a "first time" mom.
During my 7th month of pregnancy, my ob-gyn, Dr. Sutherland, scheduled a routine sonogram to see how my child was developing and also so I could find out if I was going to have a son or daughter. (I had my fingers crossed for a boy!) During the sonogram Dr. Sutherland discovered a mass on my son’s (yes, it was a boy!) spine and referred me to a specialist for further examination. He told me not to worry and that he would feel better if someone with more experience took a look. A few days later I had an additional sonogram and it was confirmed that my son had what appeared to be a "cyst" on his spine. I was not given any explanation as to how this could happen, actually I don’t think I even asked, and was told that the "cyst" could be removed at birth with virtually no risk to my son. At the time, I had no reason to believe it was anything other than a "cyst". I didn’t know of any history of birth defects in my family and because of my age, my chances of having a child with a birth defect were pretty rare.
I went into labor on the morning of May 31st, 1992. My labor was minimal and after nearly 20 hours I went to the hospital. (Boy, wouldn’t it be great if labor was "always" that easy!) Dr. Sutherland was paged and I was prepped for a c-section as to avoid any unnecessary trauma to my son during birth.
Nicholas, was born at 7:37am the following morning weighing a healthy 6-lbs. 12 oz.
Upon awakening in recovery I wasn’t told anything about my son’s condition until the pediatric neurosurgeon on staff at the hospital introduced himself to me in the "hallway" of the maternity ward. His name was Dr. Bobo (yes, that is his real name and of all things he DID have curly red hair!). Dr. Bobo proceeded to tell me that my son was born with Spina Bifida thoracic myelomeningocele and indicated that my son was probably paralyzed from the waist down and would require life long medical treatment so on and so forth. I couldn’t begin to comprehend what this doctor was telling me, as I didn’t know anything about Spina Bifida and could only lie there on the gurney in the hallway and cry hysterically! What a sight I must have been to all of the people there!
Nicholas's back was closed at 2 days old and a VP shunt was placed at 2 weeks of age. I was discharged after 1 week but Nicholas was to stay in NICU for a total of 3 months before he was discharged to go home. These were the longest 3 months of my life! It was so hard going home each night when my son was in the hospital. It was almost as if I didn’t just give birth, because he wasn’t home with me.
However, the big day did arrive and Nicholas was discharged at 3 months of age. The first couple of days were pretty scary for me as this was my first child and he was pretty fragile from his recent surgeries. He had to be handled in certain ways as to avoid putting pressure on any of the incisions on his back, abdomen and head. We made it through the first couple of days with no catastrophes and Nicholas is now a healthy-happy 12 year-old boy who enjoys what most other boys his age enjoy. He plays outside, rides his bike, enjoys horseback riding, has many friends, loves video games, argues with me about his chores and aggravates his little sister to no end.
Nicholas began walking at age 3 after alot of physical therapy and hasn’t stopped yet. His gait is somewhat off and he does tend to sway and fall regularly, but I am grateful that he walks! He has been very fortunate, as he has only had 11 surgeries total, which includes shunt revisions, a laminotomy to remove cysts that had formed on his spine, tethered cord release and just recently two spinal fusions due to kyphosis and scoliosis.
There have been indications that my son has learning disabilities associated with hydrocephalus, which most children affected with Spina Bifida are born with. Signs first began appearing while in the first grade that he was having a very difficult time reading, understanding math and difficulty with his short term memory. After much research we requested an evaluation by the school system and he was deemed "orthopedically impaired". I'm still not sure what this means exactly, but we are at least on the right track. However, as other parents may already know, this is a continuous battle, so onward we march.
My intention of this page was not only to help inform others of the affects of Spina Bifida, but to also give tribute to a strong willed young boy. Nicholas has met every challenged presented to him and triumphed victoriously! He is a very sweet, gentle, loving, hilarious child that is and has been a blessing bestowed unto me from no one other than God as a gift! I don't know if my son will ever know how much he means to me or the great pride I have in him. All I know is that all the worry and hardships have been worth it a 100 times over!
I have spoken to many parents whose children are affected with Spina Bifida and they feel the same. These children are "special" in their own rights, often times, better people than us "non-disabled" people.
They are not just individuals with Spina Bifida, they are lights for which we can see clearly by.
If you would like further information, feel free to contact me (Ashley) via email at proassets@mcremc.net.
What is Spina Bifida?-Hydrocephalus-Shunt-Learning Disabilities-Spina Bifida Links-Mothers of Handicapped Children Are Special-If you asked God- Personal Note
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