Sunday, February 14, 2010

Whats that on his face??

(Please note that these pictures and words ae very emotinal for me)

Our youngest son Mr C is unique in many ways, not only is he the only Queenslander in our family he also wears a rare form of Birthmark on his face and scalp.

Back in 2006 we were living in the hills just outside of Brisbane (having moved there 6 months earlier for a job opportunity).

We experienced our first homebirth (a story for another day) and as this little man was on his way out of his mum I noticed something on his forehead. I started to mention it at the time but stopped myself not wanting to concearn mumma bare in her birthing state of mind.

Needless to say once he was out we were all somewhat surprised at what appeared to be dark bruising and marks on half his head.

Knowing that he was perfectly healthy we waited until the next morning to go to the hospital and get his face checked out. I guess ignorance was bliss, I remember distinctly carrying him close to me through the hospital carpark and lobby so nobody could see him, it wasn't a feeling of shame, more being protective
After recording all his details we met with a doctor who appeared to be quite senior (we later found out he was pretty much the head paeds) who explained that the area on Mr C's face was a pigmented lesion called a Congenital Melanocytic Nevus.
This form (covering more than 20% of the head classified it as the "GIANT" form. The doc explained that it was rare. Aprox 1 in half a million children are born with a Nevus, its even more rare for the Giant form. He said there was explanation for the cause it was just "Bad Luck" & that there were no options for treatment. He also explained that the skin pigment was similar to that of a mole meaning cells could be more prone to developing melanoma so no more sunshine.
At this point we sat there stunned, speechless, not knowing what to say or do, another doc came in and asked if she could take some pictures for documentation, still gob smacked we agreed and the photos were shortly followed by a dozen or so stuent doctors eager to have a look.
The head doc explaiend that he had only seen it once before in 30 years, we left shortly after they had all had their fill of looks and photos.
Earlier that morning Mumma bares mother had arrived via plane and was watching the other children. I remember that afternoon, all we wanted to do was lay in bed and stare at him, I kept thinking that we did the wrong thing moving, that he was going to be picked on, that he would never have a girlfriend.
I think I just felt overwhelmed and at one stage closed myself in the garage and sat on the step crying.

But things changed, we quickly started to see past his birthmark, he was perfect in our eyes.

As the weeks past we researched more and more, turned out the doctor in his infinite wisdom (of dealing with 1 case) was slightly off, there weRe options for treatment, there were support networks in place in Australia meaning most importantly we were not alone. We also learnt that there were no sweat glands on the nevus tissue this meant the decision to move home and avoid the QLD weather and all round sunsine. Out of the blue I was offered a job and it all seemed to fit together.

We moved home, the months past, we obtained a referral to the Royal Childrens resident expert in Nevus removal. We found the birthmark became less a part of C as his eyes and smiles shone past it.

Hair Grows quickly on Nevus tissue, I would guess 2-3 times faster so we found ourselfs giving him haircuts every few months, to this day I am the only person who has ever cut his hair, the skin is very thin in places and I wouldn't trust anyone elese to do it.

In terms of treatment there we several options, I wont go into them all as they are quite complicated. Our preference (seeing the photographic evidence online) was tissue expansion. The process involes inserting an inflatable ballon under the healthy skin next to the nevus and over about 12 wees inplating it with saline. The good skin is stretched creating an excess skin flap that can be then moved over the area of the nevus alowing for segments to be surgically removed, kind of like patch work. Its the most distressing to look at but yields good results.
This was our preferred option and after meeting with the surgeon he also reccomended this, we were pleased and went on the waiting list.
In late 2007 we received the letter scheduling surgery for October. He went in and had a section removed from his cheek (yay for chubby cheeks) and the largest tissue expander possible inserted under his scalp.

Here he is the day we came home from having the expander inserted.
The expander has a Port located under the nevus tissue, it is this site where they then inject more fluid to infate the balloon.

You can see it here (raised and lighter in colour) & also the scar from the cheek section removed.

We basically went into the childrens hospital every thursday for top ups, see below - Starting to get bigger.

And bigger

On the day Miss P joined us (at home in water)
Holding his new baby sister (this is considered Full Inflation)

I took this shot of him sleeping just before I woke him so the two of us could make the trip to the hospital to get the expander removed, and hopefully more cheak tissue.
And home a few days later. He basically had about 100 stitches running from his chin to the back of his head forking across his eyebrow. He akso had a drain tube in.
He pulled his dressings off so we grabbed a snapshot. You can see the bruising from all the paddling around under his skin.

When we first saw the scars we were taken a back however as he started to heal his face settled down.
Fast forward 2 years and here we are. Waiting again for the next round of expansion
He is by far the best looking out of all our children

Until next time....


  1. he is utterly gorgeous :)


  2. He is my favouite
    (oops did I say that out loud)

  3. When will his next round of expanders be?
    Just got around to reading the rest of your blog. I think I briefly "chatted" with your wife I think on JB a while ago. My eldest Hamish, now 16, was also born with a giant hairy nevus on his face. He had skin grafts between the ages of two & four but nothing since then, he could have more but he has decided not to. I don't have any pictures on my blog but am happy to send you any if you are interested ( he is happy for me to pass them on ).
    What a small world blogging is! I stumbled upon allthatsazz ages ago( don't know her in real life but love reading all her blogs ) and then she links to you, who I work out is the husband/partner of the woman from JB who told me of her blog!! I have given up buying crappy magazines in favour of reading passionate blogs!
    I am not a stalker....honestly!!
    Will send you my email in separate comment if you have questions want pics etc

  4. DOH! ( gotta have some Simpsons in your life ). Obviously sent a second comment with email so it didn't have to be published

  5. At the moment we are on the waiting list for the next round of expansion treatment, true be told I thought it would have happened by now, but not phazed really.

    Will definately email you shortly

  6. Hi my name is Fil and have been really touched by your story.
    I have a 7 week old baby girl who has the same nevus as your little boy but hers also covers her right eye.
    We live in Sydney but would like to know who your plastic surgeon is as this condition is so rare there are not many surgeons with experience in removing a giant nevus.
    My email is and would love to speak with you.
    Thanks. Fil