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

[PaulPich]

Diana,

I'm not a doctor, I'm a father who's son had Aplasia Cutis as well.  In our case, the doctor did not operate with expanders & injections.  It was a local anesthesia & they resowed the area.  It still shows today (he's 9 now) but it's barely visible and you have to know he has it to find it sometimes!  

You would probably ask many doctors and they would better inform you about the headaches, and how frequent they occur, etc... Make sure you have him checked and everything is ok.

In our case, they ran an MRI before the operation to make sure there were no veins at the skin surface before operating.  And in our case also, the MRI made us discover something else - he had Agenesis Corpus Colossum, which means he has no Corpus Colossum between the two hemispheres of the brain.  He's developed well so far, but extreme cases of ACC (same acronym I guess!) can cause fits of convulsions & definite hand-eye coordination problems.  Now last year, we finally had him tested and he has an attention deficit disorder.  So all in all, nothing to worry about, but it never a bad idea to be informed, so you can hope for the best or plan for the worst... ;)

Good Luck!

[DianaR12]

My almost 4 yr old daughter was born with Aplasia Cutis Congenita. At 16 months old, she had plastic surgery to address the large scar on her scalp. The surgery involved inserting tissue expanders under the scalp areas with hair, and once per week for 16 weeks she got an injection into the expanders, slowing stretching the skin above. At the end of 16 weeks, the surgeon removed the expanders, extracted the scarred tissue, and used the extra skin (with hair) to fill in the gap. She now has two small surgical scars, which the surgeon recommended hair transplants when she gets older to cover them. She seems to be developing normally, although I'm a bit concerned because during the course of the last few months, she has complained of periodic headaches. They seem to go away after a short period of time (less than an hour), but I'm concerned just the same. Has anyone else experienced this?

[kerrydaisy]

The profile picture is 1 month after Daisys birth, she is now 4months,and we have a long way to go, it has now started bleeding at night?, how to stop??..

[kerrydaisy]

hi,my daughter Daisy,4months was born with ACC(15cmx15cm),and a large skull defect, underneath ACC, she previously had CSF leakage,Thus infection being mager consern. Dressing need to be applied without presure,partner and I are changing dressings,very gunkey,and bleeding now,any suggestions on dressings,comfort, ect,she will wear a helmet for some years,so skin needs to grow strong,reducing tearing. ive  heard issues with alsurs??, ady advised?? i hunt for any info of parents,or any people whom have delbt with acc,the doctors only know what they read in there notes, i would be greatfull for any advise,or if you have any question for simular issues relating,please contact me, thanks..Kerry  

[raemarieS]

Hi,
I am new to this board. My son was born with ACC on the back of his head. I was looking for information on ACC when I found that they were conducting a study . Needless to say I signed him up for it. They are studing the specific ACC on the back of the head. If you are interested please contact Ernst Reichenberger at ***@**** for more information.

[Jenalide]

My son is 6 years old and also has ACC.  His pediatrician recently told me that they are now recommending the removal of the aplasia spots on his head.  He said that new studies have found that people with aplasia are at a higher risk of getting cancer in those spots, due to the lack of layers of protective skin.  Has anyone else been told this??