Aplasia cutis congenita (ACC) is a heterogenous group of disorders characterized by the absence of a portion of skin in a localized or widespread area at birth. First reported by Cordon in 1767, aplasia cutis congenita manifests as a solitary defect on the scalp in 70% of cases, but it may sometimes occur as multiple lesions. Although most commonly seen on the scalp, aplasia cutis congenita can affect any part of the body, including the trunk and limbs. – emedicine
My pregnancy had been perfect really, a bit of spotting at about 5 weeks pregnant, but a scan proved my little one was fine and we saw a little blob pulsing, which was her heartbeat. I only had about 3 weeks of morning sickness, which came just before went to sleep at night, but I had no problems at all.
Then the 8th March 2010 came along, 17 days before my due date I started getting pains every 15 minutes at 6 pm. 9 pm came and after Paracetamol and a warm bath my pains were still every 5 minutes, so off up to the hospital, we went. All the phone calls were made to let people know she was coming. My waters were broken for me at around 3 am and then at 6 am on the 9th March I was told to start pushing.
Everything was going fine from what I thought, but when her head crowned my mom was told to press the emergency button. I was off my head on gas and air and didn’t have a clue what was going on, but next thing I knew there were about 5 midwives all rushing round me and my baby.
My baby was born with Aplasia Cutis Congenita
Apparently, when her head was out, there were two cuts on her head which were bleeding. I was passed my new baby and her daddy cut the cord, then everyone was fussing around whilst I was having my stitches. The midwives were asking my mom loads of questions – did I have her waters broken?
Did they use forceps? I’m guessing they thought the midwife had caught Ambers head whilst breaking my waters.
But a visit from the pediatrician told us that it was Aplasia Cutis Congenita– or Cutis Aplasia as it was more commonly known and it was quite common. It basically means that when she was growing in the womb, the skin on her head didn’t form completely and therefore was bleeding and would eventually scar.
The following day Amber and I were allowed to go home, our midwife asked us loads of questions about Ambers’ head as she hadn’t heard anything about it and there were nothing about it in my maternity notes, even the health visitor hadn’t heard about it and they looked a bit shocked when I told them it was apparently quite common.
I Googled Aplasia Cutis Congenita and found some awful pictures of babies with no skin on their arms and stomachs, so Amber had gotten away with it quite lightly. We went back to the hospital at around 12 weeks for a check-up with another pediatrician, who actually told us that it may have been from my waters being broken, but from the shape of the scars, it is more than likely Cutis Aplasia.
It didn’t really bother me at first, but then we started taking her out without bonnets on as it got warmer and she doesn’t like wearing sun hats and would rather play peekaboo with them.
The stares and snide comments really upset me
Amber is only 14 months old so she doesn’t know what’s going on. I know when her hair grows it will be covered and she probably won’t know about it. But when I take her shopping you can see people staring at her head, I would prefer them to just ask me what’s wrong with her head rather than make rude comments and stare at her.
I remember at about 3 months old we took her to the walk-in center with oral thrush and there was a little boy with his mom who was staring at Ambers’ head and said rather loudly “Eurgh mom look at that baby’s head!”
His mom looked at Amber and just said, “Oh yeah, now just sit down and be quiet.”
This really offended me, my little girl is perfect, people have scars everywhere just because my daughters is on her head and is quite visible doesn’t mean people can be so ignorant and make comments about it.
I know it’s wrong, but I can’t wait until her hair is longer so I can cover it up, to stop all the nasty comments and stares.
I try to be positive about it am when I see people look at her I explain what is wrong with her head before they have a chance to even ask.
My baby was born with Aplasia Cutis Congenita and I think shes perfect and I just hope that she can be positive about it when she is older too.
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