Reann, Congratulations on your new little girl! You did not say if your
other children were girls or boys. I am the mother of a child born with
Spina Bifida (L4-5) and hydrocephalus. We did not know before he was born
that he had spina bifida. His first five years of life seemed like one
surgery after another! He was our 5th child and he has 1 sister and 5
brothers (we had another boy after he was born!) Chris was a fighter since
the day he was born and I will not bore you with the details of the story!
I will tell you that he is a very bright young man - graduated from
college, drives a car (wth hand controls), lives in his own home, and works
for the State of North Carolina in the Office of Disability and Health
teaching people how to make exercise and recreational facilities accessible
to people of all abilities! Physically he is paralyzed totally below the
knee and partially below the waste. He can walk with braces and crutches
but now that he is 28 years old he prefers to use his wheelchair most of
the time. He has a neurogenic bladder and has catheterized himself since
he was 4 years old. He has a bowel routine that he follows to avoid
accidents. He is an excellent athlete and has been a competitive swimmer.
He has had excellent, consistent, aggressive medical care from the time he
was 3 months old and I feel that has bee the key to his success - that and
having to be the younger of several siblings! I have attached a picture
that is 2 years old but shows that he is very important part of our family.
Although no-one can promise that your child will do as well as Chris, the
potential is always there. My advice is to have fun with your daughter!
Take one day at a time and face the challenges that must be faced as they
come! Be a fierce advocate for her inclusion totally into all aspects of
life and learn everything you can!
Good luck with your pregnancy and your baby.
Joanne
(See attached file: new42.JPG)


Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

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[SBAofNC] spina bifida
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my name is reann i am 25 and from wales (UK) i have 2 kids and
pregnant with my 3, we have been told that she has spina bifida. she
has the meningocele type which is at L4L5 the doctor also said she
would have bowel and biadder problems and also hydrocephalus which
they are keeping a eye on she has talipes whch means she has a slight
turn in her left foot, we wolud be very greatful for any infor on her
type of SB as all we have been told is that she should develope
normally. if you wolud like to e mail me at reann@... or you
could write to me 23 church steet,caerau,maesteg,bridgend,mid glam,S
WALES UK CF34 0UY.





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