Aplasia Cutis Congenita (ACC)

[dadinTC]

Hello everyone. If anyone has a son or daughter with what my son and I affectionately call a "lucky bump" as illustrated in my profile photo . . . I'd love to hear from you.

I'm assuming my son (who's turning 4) has Aplasia Cutis Congenita (ACC) since the pictures I've seen on the internet look very similar to what my son has on his head.

My 2 biggest concerns are maintenance and prevention.

I want to maintain his good health and I don't know if or how the ACC may play a symptom to health complications in the future.

I also want to be part of the discussion so that we may help find the causes and cures for this condition.

My wife and I were blessed w/ 2 wonderful kids as a result of in vitro fertilization (IVF). Our daughter (who is 2) doesn't have ACC . . . at least not yet.

I'm trying to gather a database of ACC data so if you'd like any information from me, please don't hesitate to ask.

I look forward to discussing this with you and thanks in advance.

John

[kathymasse]

hello my son is 14 months old he has acc group 5 , he was born with 3 open spots on his head, the big one was about as big around as my ring finger (im a woman so not huge) and the other 2 were really small , the placement looks like bowling ball holes, anywhay he also has 2 cysts that where also caused by the death and absorbtion of his twin, we know the 2 cysts will have to come out very soon due to them growing so much (one on his eyebrow and one on the base of his scull) what would you recomend we do? my husbands parents want us to get the scars "removed " but i think it is unnecesary for now seeing as how he is already going to have to go through at least 2 other surguries, i think we want to wait to make a move on the scars until he is old enough to make that decision.

[nens30]

Hi.  My son is 10 months old and I believe he was born with ACC.  He had a small spot on his head when he was born near the fontanelles.  As he is growing it is actually getting smaller as the skull closes over the "soft spot".  I was wondering if you could shed some light on your growth and development.  The doctors we are seeing do not have a lot of insight into ACC since it is very rare.  How was your growth and development?  My son is having some delays in gross motor skills but not too far behind.  I was just curious is you had any insight into this. Any thoughts would be appreciated.  

[pixiedust99]

Hi there
saw your post about Aplasia Cutis Congenita and that you had the surgery for your daughter at 16 months.
we are considering the surgery....daughter is currently 7 months old.
i would love to talk to you more about this, is this possible? do you have pictures of your daughters area before and after??

[DianaR12]

Depending on the size of the scar, the tissue expanders can grow quite large. If you're considering tissue expanders for an older child, keep in mind that they will be difficult, if not impossible, to hide. Children can be cruel, so be sure you and your child are prepared for the stares and comments. My daughter was 16 months old when she had her first surgery and none of the other kids in her daycare noticed the tissue expanders or even cared that she had them. Once we were in public, it was the adults that wouldn't stop staring. I didn't blame them, and honestly, there were only a handful that I felt were being rude, but luckily she was young and didn't notice.

Despite all of that, I'm thrilled with the way it came out and I wouldn't change a thing. For whatever it's worth, I highly recommend Dr. Richard Bartlett. He's a pediatric plastic surgeon affiliated with Boston Children's Hospital.

[prueandbob]

Hello,
My daughter is 10 months old as has an aplasia cutis defect on the crown of her head was the same size as your sons was when she was born. As it is getting bigger as she grows we are considering surgical intervention. As there is such little information out there I was wondering if you could let me know your experiences thus far. How did surgery go and has the scar healed well?
Thanks,

Prue

[4Tiffany]

My son was born with cutis aplasia and now has a scar 5cm by 4 cm. We have visited a few plastic surgeons to repair his scar. One is recommending a tissue expanders while the other is not. Do you have any advice. The doctors are at Childrens Hospital in LA and UCLA medical center. Thank you!