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Aplasia Cutis Congenita -Birth defect

LadyGlitterSparkles

Whenever my son was born, we noticed he was the chosen child out of 10,000 to be born with this rare defect. When he was born the doctor assured me it was going to be ok but last night I was googling (horrible choice) and seen many bad things about this. I now have a dr appointment for him at 8:30am and plan on bringing this up. Where ACC is rarely seen, I doubt I'll get any feedback but I was wondering if anyone has experienced this?? Being completely honest, I don't know anything about this. Every thing I see is completely different. From my understanding there are different types and this defect can lead to/ be a sign of cancer, mental retardation, spina bidfa, surgeries, etc. I want to tell myself "Don't believe that ***. It's the Internet." But then the other half of me is "What if he dies from this, what if he'll never live a normal life?"

Below are pictures I've attached off google. These are almost identical to my son. The open wound is what it looked like after he was born, the bubble looking picture is what it looks like now for anyone who is curious.

Sorry for the vent but I can't get my mind off this subject.

LePlatPays

I'm sorry you have to go through this. I wish you and your son all the best.

All I can say is, often only the worst stories make it online, and the best case scenarios don't. Speak with a doctor about all your concerns, he will be able to assess the situation best.

Show 3 Previous Comments

BeautyInNature3

@LadyGlitterSparkles,

I’d love to chat more about this. My LO was born with Aplasia Cutis Congenita also. Is there a way we can make a group for this on here?

You can also email me at

ACCmom@hotmail.com

LadyGlitterSparkles

@userdeletedalias71669074,

I hope she sees this! I would love to hear her experience. Thank you so much :)

userdeletedalias71669074

@LadyGlitterSparkles,

Sorry, this content has been deleted

LadyGlitterSparkles

@LePlatPays,

Thank you so much

It honestly seems like the only thing I was finding were horror stories. I'm just hoping he don't have to suffer /:

Lollli

I'm sorry you are going through this. Try the complications board. They may be of more help. Just remember many positive stories are not posted on the internet and many bad ones are. Don't google. Always get second opinions.

Show 4 Previous Comments

LadyGlitterSparkles

@mommalomma,

Only one.

Sorry for the months late reply. I was researching again tonight and came across this post

mommalomma

@LadyGlitterSparkles,

Does he just have a single lesion on the scalp like the picture you showed or does he have others?

LadyGlitterSparkles

@SonicHogsTheHedge,

Thank you so much :)

We have got a referral for a dermatologist now! Unfortunately it can take awhile so for now I'm just waiting on the phone call and cuddling my little boy

SonicHogsTheHedge

@LadyGlitterSparkles,

No information to share sorry, but just want to wish you all the best at your doctor appointment. I agree with the notion that the worst stories end up online. Try and stay positive! X

LadyGlitterSparkles

@Lollli,

Great advice. I never even thought to check the complication board! Thank you!

missym01

My son was also born with aplasia cutis congenita. He is now 4 months old and still has the lesion on his head. It Is healing, but very slowly. I’m not sure if any of his issues that he has been having since birth are related to ACC, but I have decided it is worth looking into. He has had a lot of GI issues and went from the 90th percentile in weight from 9/2017 to 11/2017 to the 10th percentile in weight. He was also born with a heart murmer that has since gone away. I decided after googling and researching that I am going to demand that they do more testing on him just to make sure there are no other issues going on. There is such limited information ACC, and I don’t want to find out too late that my son has a heart condition or more serious GI issue. He also has a dark hair collar around the lesion. If you have any information to share I would be so thankful.

Show 3 Previous Comments

BeautyInNature3

@JanelleP2018,

thank you for sharing your story!

That’s great it is only superficial and there are no underlying health concerns.

I’d love to talk more too if you could email me at ACCmom@hotmail.com

I have so many concerns about my LO being teased as they get older.

Would love to know how you handle it and what you say.

JanelleP2018

@LadyGlitterSparkles,

MY son was born with ACC and he is now 8 years old. When I saw this post I wanted to share this with you as I know all to well the worries that such would bring and the limited information that is available. Depending on the number of lesion and presentations of the lesions determine any possible adverse effects. However every case is different bc my son has 3 lesions but does not suffer from any other illnesses nor does he have any special needs. My son is in the 2nd grade going to 3rd grade and is excelling in school and doing well socially. I say this to give you hope in knowing that not all information regarding this birth defect results in medical complications. My son underwent an MRI and we met with a geneticist as well and it was determined that fortunately his ACC was superficial and did not affect the brain or functioning. As my son gets older what we are working with him on is developing confidence around having the lesions bc people will stare and ask questions. So my husband and I speak with him on teaching him how to explain to others what it is so he doesn’t feel like others are speaking negatively about him. I don’t know if this helped any but I wanted to share since my son is older and I too was so worried and felt loss as to what could happen and what it all meant for my baby when no one in my family has ever dealt with this.

LadyGlitterSparkles

@missym01,

Also, please stay off Google! I was so convinced my son would develop cancer or be delayed because of his bump after an hour of researching. I would make an appointment with an advanced dermatologist. You will probably have to be referred to one by your kids pediatrician. I just simply told my sons ped "I trust your opinion and all, but I still have many questions and would like to get a second opinion and advanced testing."

LadyGlitterSparkles

@missym01,

You are the first person on here that I have actually met that deals with this! When I seen my post bumped I wanted to cry happy tears!! My son is 16 months old and goes in once a year to have an ultrasound performed on his head to ensure no tumors and that everything is where it's supposed to be. Over the past few weeks he has now shown that he knows the bump is there. He will try to rip it out and gets frustrated when he can't. This concerned me so I made an appointment. Everything was fine and chalked up to him being curious about what's on his head. I am super cautious about him hitting the bump on things and i drive my own self batty sometimes. The doctor said absolutely nothing could have prevented this from happening. It was not my fault and has said it's basically his little birth mark. I do think about him being bullied or if he can play sports or turning into something bad, but I'm just more thankful it hasn't been a problem yet. He is thriving in every aspect and does not seem to be delayed at all. There's also places we can donate money to and help fund researches for this rare disease :) I'm on here daily so I will see any replies to me from you. Hope to hear from you! It's hard finding someone who can relate!

Beer

I remember a few posts throughout all of these boards about this and all of them were fine. I don’t remember details but I remember it was the same one because of the images.

LadyGlitterSparkles

@Beer,

That is awesome, I've searched the boards but have had no luck finding another mom with a child that has ACC. I sure hope Missy (I think that's her name) comes back to comment!

katya80

I’m so sorry for what you’re going through. It would be nice if people would post their positive stories online, but usually they are the ones that move on with their lives, the ones terribly affected are the ones online posting about it. Please stay strong!

Hudsonsmamamg

Our 6 month old son too has this spot and our pediatrician referred us to two dermatogists whom confirmed ACC. Waiting on an appointment to talk the next steps and I too looked at doctor google and sent myself in a tizzy today. Hoping it is nothing, but worried for the worst. Worried about serious issues that could be connected, worried about the big bald spot and bullying. Just worried. It’s so rare and information is sparse. Glad to find this post to know I am not alone.

LadyGlitterSparkles

@Hudsonsmamamg,

I am so sorry you are going through this. The unknown is what makes it so scary. My son is 16 months old and here lately has noticed it is there... no other issues what so ever.nKeeping my fingers crossed for the kiddos and parents

LadyGlitterSparkles

@Hudsonsmamamg,

MamaJul39

@Hudsonsmamamg,

hi! If you’re still on here would love to know how you handled your sons ACC. Did you get it removed?

Tizka

Hi,

My son was also born with this and it looked like an ulcer on his head like the photos you attached. He's 3 months old now. We have an appt with a paediatric plastic surgeon but debating if we will actually get it fixed as have heard it can make it worse. I've not had any luck with doctors or paediatrician to get more information about it. Was just told we won't know if it will affect him till he's older. Have you found out anymore since starting this thread? My son started scratching the lesion when he was 2 months old, so I now have a sticky gauze on it permantly for now to protect it. Wish there was more information available or health professionals who understood it. The lesion gets irritated so easily although now that it's covered it's finally looking a bit better, like it's finally healing.

Show 4 Previous Comments

MamaJul39

@Tizka,

hi, not sure if you’re still active on here but would love to know what you ended up doing? Did you get your son’s removed?

Tizka

@LadyGlitterSparkles,

I'm seeing the neurosurgeon on Monday, she's seen many cases of ACC so I'll fill you in if there is anything I think is worth passing on. I found the pediatrician we saw didn't really understand ACC beyond the wound healing.

I worry about the teasing as well but hoping if I teach my son to accept his small deformity and how to stand up for himself he will be okay. But kids will be kids, so who knows how it will be for him. My biggest concern is I don't want him to feel insecure about it and I feel that we can only avoid that by teaching him his difference is okay. We plan to let him grow his hair long so hoping that it covers the area. What size is a dime? We only have dollars and cents in Australian money.

LadyGlitterSparkles

@Tizka,

Glad to hear you got in with some doctors! I have never got the suggestion for an MRI so that's something I will bring up as well to my sons pediatrician. My sons hair grows super fast & when it gets to a certain length, it does cover. But, we don't like his hair being that long because it gets in his eyes so his bump shows at all times. I am nervous about the possible bullying/laughing at he may endure because of this. �� My sons now looks more like a dime sized bald spot so hopefully kids will look over it once he starts school because I can can not even begin to think about kids bullying other kids for being different but I'm sure it will happen

Tizka

@LadyGlitterSparkles,

Sorry didn't get a notification you replied to me. So glad to hear your Son's healed quickly. My Son's is still really sensitive so we keep a sticky gauze on it which sucks, but not sure what else to do. It also looks like an indentation on his head, scar tissue seems to be formed now finally but it still gets aggravated unfortunately. We are seeing a neurosurgeon soon who said its good to screen for other abnormalities and she did mention an MRI when he's old enough as an ultrasound won't show much she said. Does your Son's hair cover the bald spot now? My Son's spot is about 14mm in diameter so its a decent size. xx

LadyGlitterSparkles

@Tizka,

Hey mama! My sons lesion actually healed very quickly and scar tissue formed (looks like a dime sized bald spot) so we never had to deal with any type of infections or getting dirty. I did refrain from washing his hair every time he was bathed. He had a lot of hair and we only washed it 1x a week to prevent getting soap because we did not know if that would hurt/burn him. Everything is still the same with my son.. he is a thriving 17 month old and you would never know he has a birth defect unless you seen the spot. The only thing that worries me is when he falls backwards or when his bump is super close to a table corner. (Just keep a super close eye on him when he starts becoming mobile to prevent damaging the spot) I would recommend doing an ultrasound on the lesion if possible. We did it with our son and that's how they checked for a tumor or anything of that sort. We also found out that way that he would not need any surgery anytime soon or maybe not at all unless our son requests it because we found out via ultrasound that all bones looked very formed under. Surgery is usually required if those bones aren't formed all the way. I wish you a lot of luck as this is a scary journey especially with the lack of information behind it. Please write me back if you want to know anything else!!

Phyrie

Hi, OP!

I don't have any advice, I've never had to deal with this. I just wanted to say I can't imagine what you're going through and I am sure it's terrifying. Please stop Googling, several years ago I had issues with my breasts producing milk and so I Googled. By the time I was done with my research I was convinced I had a brain tumor, brain cancer, reproductive cancer, or an ectopic pregnancy. Those sites are literally the worst. Turns out, it was a simple overactive gland.

Like PP said, only the horror stories make it on the internet or in the news. I hope for the best for you and yours, I'm sure it's going to be ok!

LadyGlitterSparkles

Keep me posted with the neurosurgeon, please. I'm glad you're getting in with specialists! I hope my son learns to embrace such a small defect but with the questions we get from strangers/family members I can only imagine the kids comments he may get. And here is a hand comparison

LadyGlitterSparkles

Here was the back of my sons head yesterday. It's not visible due to his hair length

Tizka

@LadyGlitterSparkles,

That's exactly the size of my sons. Wow you really can't see it, that's reassuring. And I hear what you're saying, I get asked often whats wrong with his head. I find it quite rude actually and often I'm taken back by the question. A lot of people see it and don't ask, but there is enough who have asked that have made it very clear how it will be for him. Will keep you posted re: neurosurgeon.

Tizka

@LadyGlitterSparkles,

Hi,

So the Neurosurgeon checked my son and he is all fine in regards to not showing other abnormalities. The reason he needs and MRI is to rule out another disease that looks like ACC but actually damages nerve endings in the skin of the scar which can end up being really sensitive and painful. She said if he has the other disease we will just need to monitor it and if it starts to cause him problems then he will need surgery to remove the skin there. Otherwise she said leave it and don't do any corrective surgery to the area as it can make the scar look worse. xx