Aplasia Cutis Congenita (ACC)

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]

My son has been diagnosed with ACC practically from the time of birth.  He was born with a small malformation of the skin around the fontanelles, and with an MRI they discovered that he had Agenesis of the corpus callosum.  He is now 9, and doesn't really show ANY signs of this disorder.

Although recently, in school he is showing signs of being very frustrated as homework is getting a bit more difficult for him to complete.  He is not paying attention in class and everything seems to side track him (even at home!).  It's not unusual you would say, but the teacher seems to find him to be getting more and more difficult to handle.

Could his ACC be causing the problem? Who knows...  But he's very talented in math, and seems to breeze through it, but handwriting is very hard for him and he gets frustrated easily...

[4Tiffany]

My 6 yr old son was born with aplasia cutis. He had a healing scar on his head about the size of a quarter at the time of his birth. As his head has grown the scar has grown with it. It now looks like a keloid scar which is raised and bumpy.

We have had him seen at Children's Hospital in LA recently as we consider having surgery to repair the scar.


We have been delayed because of frequent nosebleeds. We took him to a hemotologists and he was diagnosed with Von Willebrands.(low blood clotting factor) I am told this is pretty common and probably either my husband or I, who both had frequent nosebleeds as children, have this conditions as well.

Before we consider surgery to repair his scar, we need to have some tests done to make sure our son reacts accordingly to the clotting medicine given.

I would love to hear more about your story. I have never met anyone whose child has  aplasia cutis and there is not much information about the condition. I do wonder if I need to have him tested to rule out any additional anomolies he may have that I am not aware of.

Thanks,
Tiffany

[4Tiffany]

My 6 yr old son was born with aplasia cutis. He had a healing scar on his head about the size of a quarter at the time of his birth. As his head has grown the scar has grown with it. It now looks like a keloid scar which is raised and bumpy.

We have had him seen at Children's Hospital in LA recently as we consider having surgery to repair the scar.


We have been delayed because of frequent nosebleeds. We took him to a hemotologists and he was diagnosed with Von Willebrands.(low blood clotting factor) I am told this is pretty common and probably either my husband or I, who both had frequent nosebleeds as children, have this conditions as well.

Before we consider surgery to repair his scar, we need to have some tests done to make sure our son reacts accordingly to the clotting medicine given.

I would love to hear more about your story. I have never met anyone whose child has  aplasia cutis and there is not much information about the condition. I do wonder if I need to have him tested to rule out any additional anomolies he may have that I am not aware of.

Thanks,
Tiffany

[sweetpea03]

Have you taken your son to the doctors and have him diagnosed? please don't try and diagnose the condition yourself, it's best to have it looked at and know the correct diagnosis for sure.

[Kate1LU]

My baby girl was born in July this year.  She was born with what looked like an open wound on the back of her head.  The midwives and pediatricians/doctors did not know what it was and as I had no intervention there was no reason why she had any wound on her head.  After a couple of hours a midwife came on duty and examined her and said she has only ever seen one other case of this and she was then diagnosed with having ACC.  When she was a week old I had to take her back to see plastic surgeons to see if any surgery was required but the wound healed and scabbed over and I was told no further treatment would be required but she would have no hair growth but it shouldn't matter as she is a girl and her hair will grown and cover it up.  She is now 5 months and the scar is growing bigger and it sticks out alot now and is very bumpy.  I was told she shouldn't have any further problems but whenever I try to speak to anyone about it nobody knows anything so I don't know what to look out for or if there are any furture implications to this condition.

I too would love to know more information about this condition

Regards
Kate

[shanmomof3]

Hi! My oldest daughter was born with aplasia cutis. She had a large place on her head, "scars" on both sides and both knees. Her sides and knees have grown with her but the one on her head would crack open and she would get sores on her head. The dr. said it was bc she had "dead" skin there. She has had 4 surgeries and although there is still a scar it is now healthy pink skin. If your child has this it has to be first diagnosed by a pediactric dermatologist and then sent to a pediactric plastic surgeon. I hope this helps! If anyone has any questions feel free to ask or message me. Blessings, Shannon

[ACCsufferer]

I am a now 43 year old male, and I was born with Aplasia Cutis.  I had severe scarring on my scalp and knees. I would be happy to provide some insights on what you can expect as your child develops and what the best course of treatment and repair may be (I have had many of them, and technology has gotten to the point where reasonable repair is possible...but there are some bad approaches that doctors may suggest).  

[riker404]

My son was born with ACC. He is turning 12 yrs old in December.He has had two plastic surgeries with little success. The wound that he was born with did scar over as he grew. After his first surgery, the stitches fell out and a scar appeared. His original scar appeared bigger after the result. He had a second surgery in November 2010. The same result occured. He now has a circular bald spot and a vertical bald spot below the circular one. I am very disappointed with the results. My son has had the surfer/skater hairdo so we can hide the spots a little.
   He has had some fine motor development difficulties. He has also had anxiety and OCD (not diagnosed) issues. He has not had many social issues. I think that he is a very confident and happy guy. I feel that he has had a great support system so that helps.

[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??  

[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.

[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  

[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??..

[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?

[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!

[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 :)

[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

[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

[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?

[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

[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.

[4Tiffany]

My son was born with cutis aplasia and now has a scar 5cm by 4 cm. We have visited a few plastic surgeons to repair his scar. One is recommending a tissue expanders while the other is not. Do you have any advice. The doctors are at Childrens Hospital in LA and UCLA medical center. Thank you!