AOSupport

Hi I'm just wondering if anyone or everyone else continues to struggle with the acc (aplasia cutis congeinta) long after it has healed over from the original wound at birth ? Our daughters acc finally healed over at around 14 months of age, and for the most part has been replaced by smooth white stable scar tissue. However she has developed a teardrop shaped spot (about 2cm at its widest point) that is strawberry coloured which we call her "weak spot". If we tickle her and she laughs too hard or she exerts herself too much physically it will fill with blood, and looks like a blood blister. When ever she is ill or stressed in any way the "skin" (if you can call it that) almost looks like it could fall apart. It takes approximately 3 months to heal over again every time it breaks down (or my daughter pulls thetop off it...she is 3 years old). At our dermatologists suggestion we tried a mild cortisone cream which caused a large blister (in hindsight i should have gone with my gut and left it alone). He has suggested a biopsy if it continues to grow, but i am so hesitant to make even a small incision as i know the months of work involved then in getting it to heal. We still haven't found a dressing that we can use on her AOS scar tissue that won't damage it more when it is removed. So we are forever applying ointment to keep it moist and trying to stop her head touching stuff. Has anyone else dealt with this or something similar ???? we would greatly appreciate any comments.

sheree

We were extremely fortunate that our DS's acc healed very quickly. For a short time after (6-9 months?) the skin was still extremely fragile and a small spot would fill with blood when he would cry. Sometimes (not too often) it would actually tear open. All is now fine with his scar. It hasn't happened in a long while.

The only advice we were given by doctors when our DS was born was to put Polysporin on the ACC to keep it moist and covered until it healed. Once it did, we didn't put ointment on it again unless it broke open, then only Poly until it healed. It looks as though the skin has thickened up quite a bit. He's a very active toddler now, and with all the bumps and falls, we have not had any reoccurance since.