Meningoceles: A Form of Spina Bifida
Spina bifida has three different forms being Occulta which may not be diagnosed until later in life. In this condition there is no open lesion, only a malformation of the bones of the vertabrae. There may be a hairy patch or dimple at the bony defect along the spine, Meningocele which is the one form I’ll be discussing and Myelomeningocele the most severe form of spina bifida, the spinal cord and surrounding membranes are open to the skin surface.
When I fell pregnant with my second child (first alive child) we were informed at 15 weeks into my pregnancy that our son had a form of spina bifida called a meningocele actually we were told it was an Encephalocele but after birth were informed it was a meningocele. This is usually formed within the first 4weeks gestational and usually seen in 1 in 1000 live births.
Spina bifida has three different forms being Occulta which may not be diagnosed until later in life. In this condition there is no open lesion, only a malformation of the bones of the vertabrae. There may be a hairy patch or dimple at the bony defect along the spine, Meningocele which is the one form I’ll be discussing and Myelomeningocele the most severe form of spina bifida, the spinal cord and surrounding membranes are open to the skin surface.
We were actually told that for the goodness of our child and ourselves we should consider aborting our child but that will be in another article! Now this is to inform and educate people on what my son had at birth what it looked like and how it was formed. The defect is not known by many people without a medical background. I put it in simple terms so that normal people like me and probably you can understand lol!
In medical terms and also written on the site www.medterms.com a meningocele is explained as this and quote:
A condition that is characterized by the incomplete development of the brain, spinal cord, and/or meninges (the protective covering around the brain and spinal cord). Meningocele is one type of spina bifida in which the spinal cord develops normally but the meninges protrude from a spinal opening.
Which is easier terms and in the case of a cele on the head means;
A meningocele is formed usually from not enough folate acid in the body during pregnancy. As the skull forms part of the spine does not close correctly which allow the fluid around the brain and top of the spine to seak through the gap of the bones causing a large sac of fluid on the outside of the body as shown in the pictures below is my son’s defect his was on the lower part of his skull. Measuring roughly the size of a closed fist.
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Anne McNew | Mar 10, 2009 | Reply
I pity the baby. I’m so sad about the lump on his head…. but happy indeed that he survived the struggle… I hope triond friends will join us in prayers for his full recovery and normal growth as a child. God bless.
vim3 | Mar 10, 2009 | Reply
Thanks for the article. I am trying for a baby and stories like this are really useful.
Bo Russo | Apr 21, 2009 | Reply
Wow that must be some hell to deal with.Hope he’ll continuue to develop normally,hopefully he’ll catch up
Miss Heda | Apr 21, 2009 | Reply
he is a strong lil boy and is developing fine =o) he’s not yet walking tho probably won’t for a few more months but he has a left nerve eye palsy aka a wandering eye so this is keep him back a bit once this is fixed i think he’ll be just fine =o)
The Quail | Apr 22, 2009 | Reply
I agree with Bo Jack Russo and thank you for sharing this very well written as well as informative article with us.
Luffy12 | Apr 23, 2009 | Reply
why babies need to suffer that kind of illness!
Kimberly Moore | Apr 23, 2009 | Reply
I pray your son continues to become stronger in every way possible:)
Ann Watson | Jun 20, 2009 | Reply
Thank you for sharing your story. It must be helpful to many families. Just want to know at how many days/weeks Rohan had his surgery. Best to you all.
Jun | Aug 21, 2009 | Reply
My baby also had the same case of this but located in thoracic region and about less than 2 inches in diameter
Stephanie Beard | Oct 23, 2009 | Reply
Very touching article
Roxanne | Jan 27, 2010 | Reply
Thank you so much for this article. I too was born with a meningocele and I never really understood too much about it . .except that I was always a little slower physically and I had to go for physiotherapy. I’m sure your son will grow up to be a strong and healthy boy!!! I am 22 now and the only evidence I have of the meningocele is the scar, I grew up healthily and I am sure your son will too!!!!
keyaira | Apr 15, 2010 | Reply
i will keep them babiez in my prayer bcuz god dose every thing 4 a reason
but imma pray 4 yhu and your family..!
jazmine taylor | Apr 15, 2010 | Reply
AWWW POOR BABY I FEEL SO SORRY I HOPE DIS BABY GET SUM HELP ND GOD BLESS HIM/HER
scott | May 12, 2010 | Reply
hello
thank you very much for this post, me and my girlfriend are going through the same thing. just one question what did they do to fill the gap in the scull
regards
scott
Clara | May 14, 2010 | Reply
Thanks for sharing your story! I was recently pregnant, almost 6 months when doctors discovered my baby had the same thing also in the same area. The doctor immediately suggested termination, but I refused so I did as much research as possible and your son’s story definitely played a huge factor in me switching to a specialist. Unfortunately, my story did not play out as well as yours. I lost the baby, but I did want to say THANK YOU for sharing as it helped me make the right decision and heal and be at peace.
best
ozzie gurl 23 | Aug 23, 2010 | Reply
hi, im a 23 year old female, born with spina bifida, i have no defects from the disease only a scar on my lower back with hair. i have never known much about the disease and have decided i shown broaden my knowledge considering i am now at the age where i wish to have children. I am finding it hard to gather information relating to conditions that may affect me later in life due to being born with Meningocele and am seeking your help.
tonette | Sep 14, 2010 | Reply
hi my niece was born earlier today with meningocele half the size of her head. Please give me some advice or anything relating to this. I am worried so much about my niece….
Clare | Sep 20, 2010 | Reply
Hi,
My daughter was born with a Meningocele on the very top of her head, it missed all my scans and also the 4d scan i had.
She was operated on at 2 days old after an emergency section due to a regular iregular heart beat which went from being fast to slow. The pressure on the Meningocele was the cause.
She is 3 in Nov and so happy, confident and advanced in her development.
She has an indent in her head from where the lump was which Dr\’s say will grow more shape as she grows.
She does seems to be having headaches which are being looked into on Wed. I havent seen her surgeon since she was 1 year old and he discharged her.
Clare
anne doherty | Feb 2, 2011 | Reply
I was also born with meningocle spina bifida, had no operations on back and am now 54 years of age and had 5 children all perfectly healthy, 1 section, which was my first, only cos he was too big, over 9 pound and 24ins inlength, Hes now 33 and my youngest is 14\’ Had 4 normal deliveries which didnt affect spin bifida. One bunus was didnt feel labour pains till last stage whn ready to push.