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

[4Tiffany]

Hello,
My son is 9 years old and was born with cutis aplasia. We are planning to have surgery done to repair his scar which is 5 cm by 4 cm. Saw your post and was wondering about your son and his surgeries. One dr. is recommending tissue expanders and another is not recommending them.
Any advice would be great. Thank you.

[margypops]

makingcontact.org    may be a help in getting you in contact with other parents of children with ACC You could also put thei question on the Med Help Dermotology forum ..good luck

[Noller]

My daughter is 3 and was diagnosed with ACC from the time she was born and now that she is older she plays outside and always had it coverd from the sun but two weeks ago she was only outside for a few minutes and the next day I noticed it was blistered and now it has a scab and very painful for her. Our dr is sending us to a dermatologist and he is talking about surgery, will it help or be worse in the long run?

[Mae1813]

My son was born with a healed over scar on his head. My mother (as she was in the delivery room) swears that his skin was ripped off by the cervix. The doctor told me it was ACC. I was told that they would try to perform surgery where they would cut around the patch of hairless scarring and peel it away. They would then attempt to pull the skin together to cover the scalp, leaving only a thin line of a scar. I was told that as my son reaches adolescence the risk of skin cancer would increase. I was told to keep exposure to the sun at a minimum, better yet have him wear a baseball cap. He vacations in TX every summer with his grandparents and aside from the scar growing with his head, has had no complications.

I understand that me corraborating the cancer possibility is awful; however, I will pray for you and your family that things will not worsen. Again, I have seen no other symptons or complications. He is a straight A student, Boy Scout, and athlete. He can be a bit of a control freak but I doubt that has to do with ACC, ha ha.

Good luck to you.

Mae

[niloufar972]

Hi Everyone,My son born at dec 1st 2009,He diagnosed With ACC,the wound was aboutt 1" Oval,it heeld after 3 weeks but getting bigger and It's exremely bumpy,Now we have plan to operate him next week(He is 14 months Now)the plastic surgeon said it's a super facial and would not be any problem and he does not need any MRI,I would let you know about the result after operation and will post the pictures from before and after,any Concern or suggestion,please e-mail me ant ***@****
Thanks,Jan 20th 2011

[blueeyejo]

hi, ,my baby was born with a large scalp defect, which was diagnosed as ACC, my partner has this too, however we dod not know it was heriderity, soo it came as a shock. When my baby was born (sept, 2010) the wound was as big as his scalp, when he cried this would bleed and he would loose a lot off blood. after a couple of weeks we met with a Dermatologist, who advised us of the treatment and which dressings to use. I was very concious of people staring and this upset me. My baby was picking up on my anxieties.we were prescribed, Mepilex dressing (large plasters) and creams, i was really unhappy with placing the mepilex onto the head as it would not stick. after a visit to A&E, we were given Jellonet (Vasaline dressings) and this was securely placed with gauze and netting which the hospital uses over wounds n the legs etc. Since using Jello net, the wound has significantly healed with new skin, there is a small patch which is lumpy n we were told this was new skin forming. I have to say the dermatologist has been excellent and i am no longer anxious as i dress my sons head by myself. he is to have tests done by London Genetics to look at the condition and we are due to see a Neurologist in Decemeber to look at  the treatment which can be undertaken in the near future, so fingers crossed all will be well. my son doesnt have any other defects, thank goodness, it has been a very hard time n its far from over, but i feel very blessed with the little boy i have been given :)