Welcome to our Journey
with Spina Bifida
This website documents our continuing journey with Spina
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.
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 sonís (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
donít 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 didnít 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,
wouldnít 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 wasnít told anything about my
sonís 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 couldnít begin to
comprehend what this doctor was telling me, as I didnít 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 didnít just give birth,
because he wasnít 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 11
year-old boy who enjoys what most other boys his age enjoy. He
plays outside, rides his bike, enjoys horseback riding, tae kwon
do, has many friends, 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 hasnít 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 had 11
surgeries total, which includes shunt revisions, a laminotomy to remove cysts that had formed on his spine, tethered cord
release, recent decompression for Arnold Chiari Malformation II
and two spinal fusions.
Nick does have some 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 exactly meant in regards to his IEP, but we
were finally at least on the right track. Nick is now in the 6th
grade and while I do stay in constant contact with his teachers,
he is doing very well in school with the help of his LD classes
and with the help of the school system. It cannot be emphasized
enough how important it is to keep the school system up to date
on relevant medical information and research as to help them
help your child! However, as other parents may already know,
this is a continuous journey, 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.