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754648 tn?1233711367

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
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Avatar universal
update from my last post: he has grown more hair in the area he had surgery. however, there is a slightly big area on it where there is no hair. his surgeon said that his scar healed and the skin stretched a little and that is why part of it is still bald. this process has been so frustrating. his surgeon also noted that he could have botox or scar removal in the future but it is too early to tell right now. we go back in september with (hopefully) some answers. praying for a miracle that his hair just grows and we do not have to do anymore surgery !
Helpful - 0
Avatar universal
I should add, my son’s surgery did not require tissue expanders. His doctor cut the bumps out and sew the skin back together. It looked great after surgery, but now that his stitches are out, it looks almost the same as before. The doctor did say that she saw hair follicales, so hopefully it grows like it did right after surgery. It has been 2 months after surgery, and we go back May 10th.
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1 Comments
Thanks for the information!
Avatar universal
My son was born with ACC. When he was born, it looked like he had 3 small scabs on the crown of his head. Eventually, they healed to be a small bald spot. No other defects or anything. He’s actually very advanced. At 3 1/2 he had surgery to remove it. They gave him a long line of stitches and he couldn’t be around kids for a month so the area wouldn’t get infected. As the area was healing, it looked like it would heal to be just a thin line of scar. However,  A month later, we went back for them to remove the stitches. He had to undergo anesthesia again to remove it. They shaved his head again, and told us to come back in a few weeks. His hair has not grown back since then and I am just praying it grows back. After we went back to check on it, his doctor told us to come back in 3 months to see if he will need scar removal. I researched online and found that some people say that it’s normal for hair loss after stitch removal and to wait 4-6 months to see if it will grow back. We had this surgery because the bald area from ACC can potentially cause skin cancer, and because my son’s ACC was large enough to notice (a little bigger than a quarter). Anyways, I will post an update in a few months.
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Avatar universal
My daughter was born Nov 1, 2016 and I thought it was just part of baby eczema and cradle cap at first. She is now 4 months old and she is has the "hair collar". I just took her to the pediatrician and she gave us a referral to a dermatologist. Im almost 99% certain ACC is what she has. It looks just like the pictures online. I have a medical background (nurse), but I still dont really know much about ACC.
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Avatar universal
I'm desperately trying to connect with other families dealing with ACC.  My son was born with a small affected area on his head.  We waited till he was 1 year to evaluate it to see if it impacted development.  We chose to do surgery at 15 months as it was not a huge area and the dr. said (highly recommended pediatric plastic surgeon) that it was a very simple surgery that would leave him with just a small thin scar that hair would grow over.  3 weeks after the surgery he got some type of virus at daycare and the area got infected.  The stitches split open leaving him with a  much larger area impacted and it took literally 5 months to heal, kept splitting open, scabbing etc.  I was a wreck.  Dr. said that we could do a revised surgery when it healed and maybe there was more area that was affected that they missed.  2nd surgery, quick, easy, gave him antibiotics to prevent infection.  Still scabbed around the stitches and didn't heal right.  They don't know why.  Same size bald area as after surgery 1.  I'm beside myself. it seems like yet again its not healing and one day looks okay, next day has 3 new scabs.  Do we get a 2nd opinion, go to a dermotalogist?  the plastic surgeon said wait till 1st grade when it becomes a "social issue" but what about the fact that it just doesn't seem to heal now, did we miss something.  UGH!
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Avatar universal
I was born with an extreme form of ACC. Part of my skull was missing. This was replaced with a bone graft from my rib cage and a skin graft from my thigh. Over the years I had various surgeries to stretch skin that had hair over areas that didn't and eventually when I was 12 I had skin expanders to cover a large amount at one go. I am still left with a bald patch at the back but my hair falls over this and no one notices anymore. I am now 43 and don't have any other side effects from the condition.
Helpful - 0
Avatar universal
Hi my daughter was born with aplasia cutis congenita. We were unaware of what it was until she was 10 yr old. At first we thought it was something that had occurred at the time of her delivery but when I enquired as to what it might be none of the doctors had any idea! She had 2 small red bald spots, that were completely healed over at the time of her birth. As she has grown so has the bald spots. Thankfully she never had any problems either mentally or physically, she's a healthy 14 yr old with all the traits of being a teenager, I'm happy to say! I would like to know more on the type of surgery available and if it's been successful, as I wouldn't want to put her health at risk for the sake of it being cosmetically. She has long blonde hair which helps to disguise them, but at times her hair parts and I don't want her teased.  She has never had it scanned  than visionary dignosed. I know very little other than what I've read on the net. No one in my family has ever had this so it's not hereditary to my knowledge.
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Avatar universal
My daughter was born with Aplaisa cutis congenita she is 2 months now we still dont know very much about it. The sore she was born with is on the crown of her head and the size of a number 2 pencil eraser. The scab got accidentally ripped off three times in the first month of life before it didnt scab up again. She has a raised bump now her doctor says we have to watch. I guess if it turns fire truck red she will need surgery. She has been showing signs of having a headache and I dont know if this genetic disease is to blame or if its something else. I wish there was more info on this.
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18651037 tn?1466632280
I have ACC its a quarter size on the back of my head with a bump. and if i feel it with my hand it feels like i can feel a little pain maybe more itchy. I AM GETTING SICK AND TIRED.. of thinking that its ok to have it but not knowing 100 percent sure it won tcause problems in the future. i am 25 years old and all i have been reading is how it can cause cancer and in the long run cause problems.  this article has not helped me feel better. I havnt had any issues with it  i was healed in  my mothers stomach and it hasnt grown out differently or anything weird. just stayed the same as i grew...... ok. so from what im reading... i feel..do  i get surgery because it may cause problems still? can someone answer these questions. this is my life.. i dont want to have this in the back of my head for the rest of my life. no pun intended.
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Avatar universal
Hi, My son is almost 3 years old and was born with Aplasia Cutis Congenita.  He had the hair collar sign (darker ring of hair) around a soft spot that was barely covered with skin about the size of a dime when he was born.  Also, next to the soft spot was a very firm raised bump which is a bit smaller than a dime.  The bump feels very knobby like bone, but we haven't had a CT scan done yet.  We did have an MRI and MRA&MRV (to scan the arteries and veins) when he was 6 months old. Everything checked out fine and they said we'd only need further testing if he showed any neurological issues like epilepsy or seizures.    
His development is totally normal, but today I noticed bruising on his soft spot and some mushy bumps under the skin on his soft spot.  Maybe just hit his head?  I don't know.  We are going to see the doctor, but who do I see?  Pediatric dermatologist, neurologist, or geneticist???  I still wonder if there will be any other symptoms manifest in the future and would like more information about this condition.  Does anyone's child have abnormalities of the skull with bumps?
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Avatar universal
Just came across this board and my daughter has aplasia cutis congentia (I have it as well and so does my mom/her grandma) and she also has partial agenesis of the corpus calloseum. Would love to know if these are related, I have always thought no but interesting to learn someone else out there has BOTH of these things as well.
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Avatar universal
Hi, i'm Mike!

I'm 16 years old now and I live in The Netherlands. I have the aplasia cutis congenita disease too, i've been undergoing surgerie for three times and it stil did not dissappear..?  Is it even possible?

And for the parents with questions you can ask me, i have the disease by myself so it might be lot easyer to get some info about the disorder or the behaviour!

Sorry for my bad English,

Mike
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Avatar universal
hello my son is 14 months old he has acc group 5 , he was born with 3 open spots on his head, the big one was about as big around as my ring finger (im a woman so not huge) and the other 2 were really small , the placement looks like bowling ball holes, anywhay he also has 2 cysts that where also caused by the death and absorbtion of his twin, we know the 2 cysts will have to come out very soon due to them growing so much (one on his eyebrow and one on the base of his scull) what would you recomend we do? my husbands parents want us to get the scars "removed " but i think it is unnecesary for now seeing as how he is already going to have to go through at least 2 other surguries, i think we want to wait to make a move on the scars until he is old enough to make that decision.
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Avatar universal
Hi.  My son is 10 months old and I believe he was born with ACC.  He had a small spot on his head when he was born near the fontanelles.  As he is growing it is actually getting smaller as the skull closes over the "soft spot".  I was wondering if you could shed some light on your growth and development.  The doctors we are seeing do not have a lot of insight into ACC since it is very rare.  How was your growth and development?  My son is having some delays in gross motor skills but not too far behind.  I was just curious is you had any insight into this. Any thoughts would be appreciated.  
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Avatar universal
Hi there
saw your post about Aplasia Cutis Congenita and that you had the surgery for your daughter at 16 months.
we are considering the surgery....daughter is currently 7 months old.
i would love to talk to you more about this, is this possible? do you have pictures of your daughters area before and after??
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Avatar universal
Depending on the size of the scar, the tissue expanders can grow quite large. If you're considering tissue expanders for an older child, keep in mind that they will be difficult, if not impossible, to hide. Children can be cruel, so be sure you and your child are prepared for the stares and comments. My daughter was 16 months old when she had her first surgery and none of the other kids in her daycare noticed the tissue expanders or even cared that she had them. Once we were in public, it was the adults that wouldn't stop staring. I didn't blame them, and honestly, there were only a handful that I felt were being rude, but luckily she was young and didn't notice.

Despite all of that, I'm thrilled with the way it came out and I wouldn't change a thing. For whatever it's worth, I highly recommend Dr. Richard Bartlett. He's a pediatric plastic surgeon affiliated with Boston Children's Hospital.
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Avatar universal
Hello,
My daughter is 10 months old as has an aplasia cutis defect on the crown of her head was the same size as your sons was when she was born. As it is getting bigger as she grows we are considering surgical intervention. As there is such little information out there I was wondering if you could let me know your experiences thus far. How did surgery go and has the scar healed well?
Thanks,

Prue
Helpful - 0
Avatar universal
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!
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Avatar universal
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.
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535822 tn?1443976780
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
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Avatar universal
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?
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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 :)
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