I wish I had this support 2 1/2 years ago!

Joelle - posted on 02/10/2009 ( 7 moms have responded )

9

6

0

Hello! My son had metopic craniosynostosis which was noticable at birth. He had his corrective operation at 6 months old. He is now 3 years old and doing great! I really wish I would have had this kind of support when we were going through his surgery and recovery. If there is anyone who needs a mom's perspective on the surgery part or the recovery or anything else you want to talk about pertaining to this condition I would be happy to listen or to help if I can!



Joelle

7 Comments

View replies by

Erica - posted on 08/28/2015

4

0

1

I know this post was from a long time ago. But could you please explain the recovery to me. I am so nervous. We go for surgery in 2 months

Lynnette - posted on 09/05/2009

2

20

0

Hi...my name is Lynnette, I'm from Australia...my 8 yr old son was diagnosed with Right Lambdoid Craniosynostosis at 9 1/2 months of age, within 2 weeks of the xray to confirm the diagnosis, he was in the childrens hospital awaiting the surgery the next day...(after reading all your stories about how long it takes to get into surgery over there...i am glad i live here)...
He was unable to sit unaided, roll over or do any of the "normal"things that most 10 month olds are able to do, but the day after surgery he was sitting by himself, 2 days after, he was on his hands and knees rocking like he was going to crawl, and within 4 months he had caught up and started to walk...still amazed to this day what the surgery did for him.
But...there is a down side to his condition and the surgery, he has a developmental delay, a mild intellectual disability and a sleep disorder...life is sometimes hectic and stressful, but a more affectionate kid you will never find.
He has fought for every breath he has taken since the moment he was born...(not breathing and by c-section)...and he now attends a special school...not sure if they are known by the same name over in the US...but I do know what you all are going through and have been through...

And yes, some people think that i am mad, and some believe i am a saint, because when Zac was born, I already had a 3 yr old, and have since gone on to have 3 more children....i do what i do because i have to, because they are my babies and i would not change anything for the world, not for any gratification, all i can say to those that struggle with the fact that in the end, your child may be different from the norm, is that you can accomplish anything with thje love and support of your family and friends...

Lisa - posted on 08/26/2009

1

0

0

My daughter is about to undergo surgery for metopic on Sept 11, Any adivice? I would appreciate it!

Stacey - posted on 02/12/2009

3

24

0

Hi Ladies-I too have a son that has had 2 surgeries to correct metopic synostosis. His first surgery was at 6 months and the second was at 18 months. We live in SC.

Jackson is now a very heathly and bright almost 5 year old! He will more than likely have to endure 1 more surgery once he is 7 or 8 because he doesnt have a ridge above his eyebrows to protect his eyes. it is great to have this support so if anyone has any questions...I am here!

Joelle - posted on 02/10/2009

9

6

0

I live in Minnesota and fortunately we live close enough to Rochester Mayo Clinic that my son has all of his checkups and evaluations there.  I know exactly what you are talking about.  When my son was diagnosed, I too blamed myself.  I didn't think that it could possibly just be a genetic oops, however that was precisely what it was.  With the surgery...I think my husband and I took it worse than my son did. 

Katrina - posted on 02/10/2009

2

12

2

Hi Joelle. I saw your thread and wanted to say hello. I gave birth to my son on Dec 31, 2008 and he was diagnosed with Sagittal Craniosynotosis. Hes been to the neurosurgeon for his consult and right now the surgery is scheduled for June. At first when the dr told us what was wrong it was a jab to the stomach. But Ive researched it and its really not that bad. I thought I was to blame for him to have this condition but it wasnt. Where do you live?



 



Katrina

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms