Aplasia Cutis Congenita

[bandnmom]

Has anyone ever heard of Aplasia Cutis Congenita? Or even know of someone who has this? I am desperate  . My daughter was diagnosised with this in Jan. 2005 at the age of 15 months. She has had 2 major surgeries to correct some things but now there are some things going on with her and since ACC is so rare the doctors are not sure what is going on or what to expect in the future. Someone else in my shoes would help a great deal.
Thanks in advance.

[Coleymelody]

My son had this at birth problem is his had already healed when he was born he had 2 large healed scabs near the hair where it spirals and doctors didn’t know what it was 3 years later my son has all sorts of disabilities! And also contracted menenjitis and was really poorly he was born purple not breathing proply or crying and was grunting! I also carry the herpes cold sore virus! I have been doing a lot of research and it’s all linked! And when he was still interm he must of had the open wound to back of head but had it so long it healed by birth! I was induced and had my waters broken  and didn’t give birth for atleast 10 hours later which means baby is prone into infection and in my case a deadly one! As my membranes ruptured they say Cos of a tempretjre but who knows but when this happened my baby was attacked by this infection or virus which I think could b me herpes but defiantly not the genital version and it has affected his brain I was young no one could tell me how or why or what was happening all they knew was he had a infection and had to have antibiotics as they suspected bacterial menejitus but the thing that is making me angry is no mri was done he was born with low sugar levels! And the scabs on the head and where they were based was a classic indicator of  Aplasia cutis congenita  Which causes meningitis and septic but they took no notice of these wounds to his head! Also if this was a liaison and a deep one before it healed it means this was subjected to receive the most impact from the infection inside me and would affect that area the most as it was a open wound and also infection would of passed onto him whilst still inside the womb so Abby must of suffered a substantial amount! I had no answers to anything at all not even why he could of contracted meningitis and when I got home I searched the symptoms but NOT the scabs on head and this led me to belive I was a Carrier of steep b so when I had my second child I told her doctors and they said they would give me IV Antis In labour to prevent infection! Even though the hospital or doctors never actually tested me for this and they treated me and my daughter for this when actually there is a more rare case and serve case which was herpes virus so again they had actually treated us wrong as no checks weee made to confirm I even had this! After my son that suffers severely was about 3 weeks the hospital offers a MRI scan which I asked what it was for and they said it was just on research but again didn’t mention for what! Unfortunate I missed the appointment as I didn’t really think it was need as I had no understanding then of what truly happened to us in our awful labour’ my son is also left with a deep scar that doesn’t grow hair around the hair spiral area on back of head! I honestly think they knew what had happened and realised the effect it could of had and cause drain damage but would not admit to this as they didn’t really check for what fused it to happen, I also suffered from gestational diabetes in both pregs! I feel so clueless and got so many unanswered questions but my son is nearly 4 and it’s showing GDD Autism no speech no proper eye contact, eating disorders sleep disorders and a whole lot more I know he has brain damage from all this but how do I prove I’m right when they gave me no information on this will they belive my research or turn me away? Help I’m going insane with all this evidence and research  

[drewbrooke]

I read you comment, I believe my son has had this acc for 12 years.  but Im awaiting a dx for eds.  If you find anything let me know.  Or just to talk :)

[Jiji1575]

Hi Kimby2006 and anyone else who came across this site looking for a surgeon,

I highly recommend Dr. Richard Allen Hopper at Seattle Children's Hospital http://www.seattlechildrens.org/medical-staff/Richard-Alan-Hopper/

He specializes in rare face and skull surgeries.

My 17-month old son just had surgery a few days ago. His case was minor (knock wood). He had two blister-like spots that only went as far as the hair follicle, which they removed. Then the doctor sewed his skull back up. The stitches look perfect--like what you'd find on a baseball. Dr. Hopper wasn't kidding when he said this was routine; here's a 3-part article about a girl with Crouzon syndrome who he operated on in 2004: http://seattletimes.nwsource.com/html/localnews/2002090521_brennaface14m.html
However, he and his staff treated our son (and us) with the utmost care and respect. Everything went so smoothly. The followup appointment is in a few days.
If you decide to schedule an appointment, do it soon. We had to wait a couple months between the initial meeting and surgery.

Good luck to everyone and their kids!!!

[AOS]

There is a new ongoing research study on aplasia cutis congenita at Harvard; more information on the aplasia cutis congenita blog in Facebook

[DianaR12]

I highly recommend Richard A Bartlett. He's a plastic surgeon and has his own practice, but he's affiliated with Children's Hospital Boston. He has done hundreds of these surgeries, although most have been for birthmarks/hemangiomas. Even though it's for a different condition, the goal of the surgery is the same. Good luck!

[keke196]

THe site wont let me post my email address so can anyone just leave me a reply thanks.

[keke196]

Hello, my 6year old son was born with acc. He has a bald spot in the middle of his head. He also has it on his arms, legs and butt. Its not that bad on those areas just the scalp. Its awful. Its huge but thankgod he has a head full of hair to cover it. Hes been to a surgeon for reconstructive surgery about it but the doctors are talking about skin expanders or getting 3 different surgeries to fix his scalp. I mean I just need to know is it a safe surgery? The doctor said no risks but im sure its always a risk when it comes to surgery. I just want to talk to anyone whos child has had surgery to correct acc. Thanks i read my email everyday so just send me a reply to ***@****

[kimby2006]

My daughter and myself have ACC, they plastic surgeroen that I had now is retired and they nerosurgeon that worked on my daugther is retiring, she is 2 and will start her rounds of surgerys beginning of next year. What surgeons did you all go to, and where are they located. We are willing to travel to get her to a great one! Thanks for your help!!

[riker404]

I was reading your posts and looked up EDS.  My son who was born with ACC has very flexible joints. He has fine motor and coordination difficulties. I will look into the connection as well. Thank you for the information.

[momoflil]

I am on here looking for the connection between EDS and ACC as well.  My daughter (born on January 9th, by the way) was born with the same type your daughter has.  Thankfully she never has had to have surgery, just the two bald spots on the back of her head.  Myself, son and daughter all have another health problem that has lead her doctors to believe we all have a form of EDS.  I will be tested shortly to see if I do or not, but when I thought of her ACC, it made me curious.  I too wonder what the corilation is, if there is one.  Please keep the post coming if anyone has any more info. So sorry to hear that those with much more severe forms of ACC have had to endure so much,  Hang in there!!!

[shanmomof3]

I don't know if there is a connection between the two but there is a good chance i have EDS. I will find out in feb and that is something I intend to ask the dr. I will let you know! Blessings, Shannon

[shanmomof3]

I dont mean to contradict your dr but my middle child has cutis aplasia but my other two dont. What our dr told us was that if two people who have the recessive gene for this have children there is a possibility of having a child with aplasia cutis. She also said she has never seen it happen twice in the same family! My daughter's is on her scalp which we have had 4 surgeries. She also has places on her sides and knees. Blessings, Shannon

[mommyof2607]

My daughter was also born with ACC 8 years ago. She did not have a hole in her skull just an ulcerated lesion on the top of her scalp. She too went through the skin expanders then surgery at the age of 3.  Come to find out, my husband is the carrier. He has a series of small scars on his scalp AND he is missing 1 joint in all of his toes. My husbands father also has a series of scars on his head as well. When I got pregnant with my son, I went to a genetic doctor and he had said only the carrier can pass it on. My daughter will have a 50% chance of having a child afflicted with this, since my son didn't have it, he cannot pass it along. I hope this helps.

[shell_mlh]

my son was born in july 09 with aplasia cutis and had a hole in his head, now 8 surgreys later and 5 months later he is still have the hole, how can they fix that cuz the doctors dont have a clue. anyone with answers please e-mail me at shell_mlh***@**** and for subject put aplasia cutis so i wil open that e-mail.. please help me,and my baby
thank you

[LilMom192002]

My daughter was born with two small areas next to one another in the back of her head.  Thankfully she never had to go through any surgeries or such for it.  In time it was thicker, although hairless.  I am so sorry you have both had to go through that though.  I am here because I am trying to see if there could be any link between ACC and EDS (Elhers Danlos Syndrom).  If you have any info on this, please let me know.  

[bandnmom]

Thank you for responding. My daughter was born with a severe form of it also. She had 2 large holes in the skull, the bigger  on the top and a smaller one in the back. She also had no skin just scar tissue covering the entire top of her head. At 18 month she went threw the skin expansion process. 2 large expanders in her head that were filled with the saline once a week for 16 weeks. Then the final surgery when they did the skull grafting and removal of the scar tissue and pulle all the expanded skin together. the surgeon did a great job and i am learning how to cover the scar lines while doing her hair. Glad all of that is in the past. As you said there are not many ACC patients out there so as far as the future goes I have so many questions that the doctors just cant answer. Kind of a learn as you go process. Dont ;like it but what choice do we have....right??? Thank you again!

[Emylou]

I have this condition.  I was born with a rather severe form of it which included part of my skull missing.  This resulted in me having to have a bone graft (taken from my ribcage), skin grafts and various operations to stretch skin which had hair on to it on to areas that had been left bald by the skin grafts.  Eventually when I was 12 years old the surgeon used skin expanders (one in each side of my skull) to expand the skin over 13 weeks (think they injected them with saline) so that when they took them out there was a mass of skin with hair to stretch over the remaining bald patch.  This covered about half of it and I am now left with a patch at the back which is covered by the fact that my hair is straight and shoulder length so unless the wind blows no one really notices it.  I had the option to have the skin expanders again but by this time I was eager to get on with my life and give hospitals a miss!  I live a full and healthy life and this condition has had no long term effects on my life apart from having being a great conversation topic in the pub when people say WHAT!!! The only thing I find difficult is making people believe it because as you have probably found there arent many of us around.  Hope ur daughter is okay - would have replied sooner but I've only just found this site.  xx

[bandnmom]

Anyone?