Aplasia Cutis Congenita

[bandnmom]

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.

[bandnmom]

Anyone?

[Emylou]

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

[bandnmom]

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!

[LilMom192002]

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 (syndrome)).  If you have any info on this, please let me know.