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371980 tn?1276744409

Aplasia Cutis Congenita

Has anyone ever heard of Aplasia Cutis Congenita? Or even know of someone who has this? I am desperate  . My daughter was diagnosised with this in Jan. 2005 at the age of 15 months. She has had 2 major surgeries to correct some things but now there are some things going on with her and since ACC is so rare the doctors are not sure what is going on or what to expect in the future. Someone else in my shoes would help a great deal.
Thanks in advance.
18 Responses
371980 tn?1276744409
Anyone?
Avatar universal
I have this condition.  I was born with a rather severe form of it which included part of my skull missing.  This resulted in me having to have a bone graft (taken from my ribcage), skin grafts and various operations to stretch skin which had hair on to it on to areas that had been left bald by the skin grafts.  Eventually when I was 12 years old the surgeon used skin expanders (one in each side of my skull) to expand the skin over 13 weeks (think they injected them with saline) so that when they took them out there was a mass of skin with hair to stretch over the remaining bald patch.  This covered about half of it and I am now left with a patch at the back which is covered by the fact that my hair is straight and shoulder length so unless the wind blows no one really notices it.  I had the option to have the skin expanders again but by this time I was eager to get on with my life and give hospitals a miss!  I live a full and healthy life and this condition has had no long term effects on my life apart from having being a great conversation topic in the pub when people say WHAT!!! The only thing I find difficult is making people believe it because as you have probably found there arent many of us around.  Hope ur daughter is okay - would have replied sooner but I've only just found this site.  xx
371980 tn?1276744409
Thank you for responding. My daughter was born with a severe form of it also. She had 2 large holes in the skull, the bigger  on the top and a smaller one in the back. She also had no skin just scar tissue covering the entire top of her head. At 18 month she went threw the skin expansion process. 2 large expanders in her head that were filled with the saline once a week for 16 weeks. Then the final surgery when they did the skull grafting and removal of the scar tissue and pulle all the expanded skin together. the surgeon did a great job and i am learning how to cover the scar lines while doing her hair. Glad all of that is in the past. As you said there are not many ACC patients out there so as far as the future goes I have so many questions that the doctors just cant answer. Kind of a learn as you go process. Dont ;like it but what choice do we have....right??? Thank you again!
Avatar universal
My daughter was born with two small areas next to one another in the back of her head.  Thankfully she never had to go through any surgeries or such for it.  In time it was thicker, although hairless.  I am so sorry you have both had to go through that though.  I am here because I am trying to see if there could be any link between ACC and EDS (Elhers Danlos Syndrom).  If you have any info on this, please let me know.  
Avatar universal
my son was born in july 09 with aplasia cutis and had a hole in his head, now 8 surgreys later and 5 months later he is still have the hole, how can they fix that cuz the doctors dont have a clue. anyone with answers please e-mail me at shell_mlh***@**** and for subject put aplasia cutis so i wil open that e-mail.. please help me,and my baby
thank you
Avatar universal
My daughter was also born with ACC 8 years ago. She did not have a hole in her skull just an ulcerated lesion on the top of her scalp. She too went through the skin expanders then surgery at the age of 3.  Come to find out, my husband is the carrier. He has a series of small scars on his scalp AND he is missing 1 joint in all of his toes. My husbands father also has a series of scars on his head as well. When I got pregnant with my son, I went to a genetic doctor and he had said only the carrier can pass it on. My daughter will have a 50% chance of having a child afflicted with this, since my son didn't have it, he cannot pass it along. I hope this helps.
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