Conversation with a 6 year old…

We went out for a BBQ last night and I ended up in a very funny conversation with (a very smart) 6 year old and it got me thinking…

I’ll tell the story of the conversation first, then let you know what it got me thinking about.

Miss 6: What’s that on her head? (Obviously ‘her’ is Ellie)

Me: A scab (This answer was enough for an inquisitive 3 year old at Brenna’s kindy so I thought it would cut the mustard in this situation as well)

Miss 6: What’s it from?  Did she bang her head?

Me:  She was born with it…it’ll get better soon (surely that’s got to keep her happy????)

Miss 6: Why was she born with it??

Me: (Thinking, Oh well, she asked…) I went into a very long winded explanation of the entire story. She was thrilled to be given such a long answer.

Miss 6: Was I born with that?

Me: No

Miss 6: How do you know that???

Me: You don’t have massive bald patches on your head

This answer gave her much pleasure…we laughed for a long time and it felt good.  I never knew I’d be able to see the funny side to our situation so easily and the fact that this conversation with a 6 year old brought me such happiness it then got me thinking…….

Children’s honesty is amazing.

I love the way they ask straight up about Ellie’s head.  We are so used to seeing it that I kind of forget when I’m out somewhere new what it must look like.  However, I’m never left for long until someone quite obviously reminds me with their ‘trying to look without looking’ looks.  Sometimes I wish I had a sign up….no I have not dropped my baby or whacked her over the head with some hideous object….she just has Aplasia Cutis.  Then the fine print would then answer all their Q’s:

• Yes she was born with it
• No the doctors don’t know what caused it
• No it wasn’t picked up on during a scan
• No she wont grow hair
• Yes the scab will heal
• Yes she will eventually have hair one day once the plastic surgeons insert a saline balloon blah, blah…you get the drift

These reactions from adults have also made me think,  How would I react if I saw a baby like Ellie?  Honestly?? I’d really want to know what ‘it’ was, but I’d never ask cause that would be rude.  So, essentially I’d probably be just like all the people out there that ‘look without looking’ at Ellie.  Isn’t it funny that kids just say what’s on their mind, whereas adults try and be polite and not pry because they think it’s the done thing whereas in many situations if they just asked, it would stop a lot of wondering and speculation.

So after all of this, what would I wish people would do???

Just ask. 

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4-6 weeks???? More like 4-6 months!!!

When we left the hospital, they told us it would be healed and scarred over in 4-6 weeks….obviously we’re still waiting for that to happen.  I’m sure they must have known that it wouldn’t heal that quickly.  I’m pleased that back then I didn’t know how long this would take or we would have struggled more than what we already did (that’s a whole story for another day).

We are now on 3 monthly visits with the dermatologist until she turns 1 then we’ll find out more info about when surgery will happen.  I badly want all the answers now…

• How many operations will there be?
• How large will the saline balloons get?
• How long will the balloons be under her scalp for?
• Will the balloons be painful for her while they’re being inflated?

The doctors must be wanting to test my ‘must know everything now’ syndrome…they are doing a great job of it too!!

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What is Aplasia Cutis??

Here’s the info we were given on day 1…

Aplasia cutis (sometimes called ‘aplasia cutis congenita’) is a condition where a newborn child is missing skin from certain areas. In about 70% of cases it is a single lesion on the scalp, but sometimes multiple lesions may appear on other parts of the body. They vary in size from 0.5cm to 10cm.

Lesions that involve only the epidermis (upper layers of skin) are shallow and usually heal over with scarring before the child is born. A deeper lesion involving the dermis, subcutaneous tissue, or rarely, the skull may be ulcerated.

Membranous aplasia cutis is the term used when there is an underlying flat, white membrane, which overlies a defect in the skull. It can be associated with a neural cranial tube defect (encephalocoele or meningocoele), which can be demonstrated by ultrasound scan showing misplaced brain tissue outside the skull.

Ellie was given a brain scan on day 2 to rule out this last piece of info…thankfully the scan came back and gave her the all clear

How do you get it and who is at risk?

It is not yet fully known why aplasia cutis occurs but the following factors may be involved:

• Genetics
• Teratogens (drugs or chemicals causing birth deformities)
• Defect in skin development in the embryo/fetus
• Early rupture of amniotic membranes
• Aplasia cutis affecting the limbs may be associated with the death of a twin fetus (papyreous fetus)

It is a rare condition with no one particular race or sex more at risk.

The doctors can never be 100% sure about what causes each case of Aplasia Cutis.  In Ellie’s case, the main thing they think caused it was that on my placenta, there was another ‘lobe’ which they think may have been from an undeveloped twin.  This lobe was sitting right on Ellie’s head and was the same size/shape as her largest effected area.  They believe that the pressure from the lobe did not allow her skin to develop.  This does not give a reason for the ‘river’ area that runs down to her forehead

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Photos

This is the first photo we took…at exactly 1 week old.  This is the largest part of her Aplasia Cutis, but from the top of the diamond is what looks like a river that runs right down to her forehead.  For some reason we didn’t take many photos of that area.

 

 

 

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‘That’ diary entry….

In italics is what I wrote in my diary.  The regular text is stuff I’m adding now as I write this

25 August

Ellie is 4 days old and it’s been a full on 4 days!!

Day 1… We got up to the hospital at 8am  and started to get prepped for the c-sect.(Ellie was found to be breech at 37 weeks…I think she knew all along it wouldn’t be safe for her to be born the natural way -obviously at this stage we were completely unaware of what was in stall for us!) The duty midwife that was assigned to us was fabulous. 

At about 10.15 we were told it was our turn so we walked down the long, quiet corridor to theatre… what a strange feeling it was to walk myself into an operating room.  As soon as I got in there I had a few tears, I guess the enormity of what was about to happen had only just hit me. 

Ellie was born at 11.01am.

The experience of the c-sect was weird…I couldn’t feel any pain but I could feel the sensation of them touching me (and wiggle my toes) so I kept thinking the spinal wasn’t working.  The anaesthetist distracted me by asking about Brenna and before I knew it they were ‘slicing and dicing’.  I was surprised with how rough the procedure was, as I was being pushed around quite a bit.

When Ellie was being born J said “She’s giving us a brown eye” because she was lifted out bum first.  Once born they took her over and checked her out.  At first they thought she had a large port wine birth mark on the back of her head.  When my  midwife came to ‘break the news’ to me my response was simple “Doesn’t matter” I replied, “her hair will cover it…no biggy.”  They quickly realised it wasn’t a birth mark and the paediatrician in the room (who looked about 12) had no idea, so she called in another paed who also had no idea.  That paed then called in the Big Boss…he also didn’t know what it was.  All this time, I was lying on the table being stitched back up.  Each paed was fantastic, they would come and tell me what was happening and admitted freely to being unsure about what was wrong with her.  For some reason I was strangely calm (I still hadn’t seen her head at this stage).  We were now waiting for a specialist to come and see Ellie.  I badly wanted skin to skin, so they put a dressing on Ellie’s head and covered it with a hat and tucked her under the covers with me.  I couldn’t stop smiling.  She was beautiful!

At this stage we were wheeled into recovery where a dermatologist turned up and diagnosed Aplasia Cutis.  I can still hear her words like it was yesterday “It’s going to be a long road”.  We were gutted… I’d never seen J cry before and I’ll never forget the horrible feeling in my gut that our life had suddenly changed from celebrating the birth of our 2nd daughter to worrying about her future and the medical procedures that were going to follow in years to come.

The dermatologist has told us that her Aplasia Cutis is a very large one and it should take about 4-6 weeks to ‘heal’ and for the scar to form.  Obviously, scars don’t grow hair, so our perfect wee girl is going to have huge bald areas…I feel sick in the stomach thinking about her schooling years (both being teachers, we know how horrible some kids can be to a child who has anything slightly ‘different’ about them.)  We’ve been told she’ll have plastic surgery when she’s about 3-4 years old where they’ll insert saline balloons under her scalp and slowly fill them up to stretch her skin that does have hair on it, then that will be pulled over the bald areas.  They said that it will then mean she has no bald patches, but her hair will be much thinner in those places… even though this is good news, I still can’t help but feel that it’s not enough.  I don’t want my daughter to have ‘thin patches’, I just want her to be a ‘regular’ looking kid.  Maybe I’m over-reacting…my hormones are at that horrible 4 day stage so I guess only time will tell if my feelings will change…  I honestly assumed I’d have a healthy baby born that would come home on day 2 and we’d carry on with our regular life.  What did we do to be dealt this crappy hand??

For the 1st week, we’ve got to clean and dress the wound twice a day.

27 Aug (6 days old)

Well, I keep getting busy so there’s alot more to tell since 2 days ago…
Ellie is in NICU (Newborn Intensive Care Unit).  On day 2 (up in the ward) she stopped breathing.  She was rushed off and given oxygen and had heaps of mucous suctioned out of her.  She started breathing again but was very unresponsive so they took her down to NICU.  She was incubated and had a nasal gastric tube put in.  There were wires everywhere and needles in her hands.  It was such a horrible sight but deep down I knew she was being well cared for.  The blood tests that were taken were sent away to check for a possible infection from the ‘wound’ on her head.  The paed also wanted to check for any chromosomal abnormalities and he’d only seen Aplasia Cutis in children with syndromes.  We have to wait a whole week to get back the results (they came back clear – phew!!)

This must have been where I just got too busy and ‘over it’ in regards to writing about  what we were going through.  It was such a surreal experience.  We asked for no visitors as we were finding it hard enough to come to grips with trying to understand about Aplasia Cutis that we couldn’t face having to answer well meaning questions about her situation.  We are so thankful to all our friends and family who respected our decision and gave us time to accept what was happening and for things to settle down before coming to see us.   Because of this though, it was such a different feeling compared to when Brenna was born.  After her birth, we were inundated with visitors and there was excitement all around.  This time, there were lots of tears and quiet time spent with just J, myself and Ellie.  It was hard on Brenna because she wasn’t allowed down in NICU as she was under 3 at the time so when she came to visit me at the hospital, she’d ask where the baby was… very confusing for her!

If you’re still here and haven’t given up reading my looooong post….thank you.  There are more tales to tell, but that can be for another day….

Me xo

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Hello world!

Well, where to start??? My youngest daughter turned 4 months on the 21st December and I finally feel ready to tell the world what’s happening in our lives.  Ellie was born with Aplasia Cutis.  I’ll soon update you with more info about it etc but for now I just want to get started with this blog.  Monday was the first time I’ve ever googled the condition and I couldn’t find many ‘real’ people telling their stories (just alot of doctor stuff), so I hope that someone who is going through this will come across my blog and find something to relate to and try and find the funny side in our shared situation to make it easier to accept.

I’ve been told that others have it so much worse (which is true) and this is the way I’ve tried to look at our situation, but both J and I feel that it’s OK to say that even though it could be worse, that what’s happened to our beautiful girl is still so hard for us (and in the future – her).

When Ellie was born I kept a diary while she was is NICU.  I think the easiet way for me to tell you our story is to start with that first diary entry.  It’s a long one, so keep checking in to see it being updated….

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