Death of a Hemangioma?

We hope so!

Not everyone being directed here will know us personally so I'll start with an introduction.

My beautiful little girl was born in January 2010.  Kyleigh Dawn Johnstun.

After the first 24 hours she was born we noticed a strawberry colored mark on her head near her eye.  It was heart shaped and smooth against her skin.

 Within just a couple weeks, the mark started to distort.  It rapidly became a growth that protruded from her face.

As we watched, it kept growing.

(Will post more at the end of this blog)



 It was diagnosed as being hemangioma and only affects 10% of infants.  I have found that Kyleigh fits 3 out of 6 high risk factors: female, white, low birth weight.  It has also been said that premature babies are higher risk as well and she was 3 weeks early.

  I found a site that gives a basic run down in a simple way to understand.

"Infantile hemangioma describes a benign (non-cancerous) condition affecting cutaneous blood vessels. It is also known as proliferative haemangioma because it is due to proliferating endothelial cells; these are the cells that line blood vessels.

Infantile haemangiomas are proliferative lesions that usually develop shortly after birth. 

Over 80% of infantile haemangiomas occur on the head and neck area. They grow to 80% of maximum size in the first three months and most stop growing at about 5 months. However, they may keep growing for up to 18 months.

After that, they undergo regression or involution. This can take as long as 3-10 years. Nearly all flat infantile haemangiomas eventually involute and disappear without treatment. However, regression of bulky haemangiomas tends to be incomplete, and they may leave an irregular atrophic (thin) scar or anetoderma (a dented scar) in at least 50% of cases."   

Unfortunately Kyleigh has a mixed lesion, also described above as bulky.  This type is harder to treat.  It is less reactive to most treatments.  Her best chance is to undergo surgery and have it removed in one piece, leaving her with minimal scarring that will fade as she gets older.  If left untreated it will likely take YEARS to very slowly involute and leave behind marred skin.  

Kyleigh is now 16 months old (as of May 2011).  She's a gorgeous, smart little girl with a big personality.  She's everything a little girl should be... sassy, friendly, silly, prissy. She is the best little mimic I've ever seen!  From copying words, dance moves, all the way to being busted with baby toenail clippers attempting to clip her own toenails!  She amazes me every day with how intelligent she is, I couldn't be more proud.

 I'm sure you knew it would get slightly depressing and this is where it does. Every single time we go out in public her mark is noticed. Literally every single time. She gets stared at, pointed at, snickered at, even ran from. Little kids, even when they aren't trying to be cruel, can be so brutal. Adults are sometimes worse. We've gotten the polite questions, the rude questions, the on the fence type. Occasionally I get targeted as well when people think it's an injury from poor parenting. "What's wrong with that baby?" "Hey what happened to your baby? Did she fall?" "How did she bump her head?" "Oh that's a birth mark isn't it" "MOM! Oh my God did you see that baby's face?" "Ewww, that's creepy." "That's scary mom!". Each one isn't so bad. Until you hear it when you go grocery shopping, to the bank, to the park, to the zoo... We are never allowed to forget. Whenever someone meets her it's the very first thing they notice and what's on their mind. I've struggled with knowing that as long as that is there, my innocent child will never noticed for anything else no matter how beautiful she is on the inside or how beautiful the rest of what is on the outside is as long as the hemagioma is allowed to take over her face.

I knew a time would come when she would notice what people were talking about.  

I expected it to come later.... and it didn't.  Last week a woman asked a question in a store and Kyleigh grabbed it with her hand to feel it and then used her hand to hide it.  I cried later. She touches it and pulls on it now but that was the first time she hid it. Broke my heart as a mother.  

This isn't a 'boo boo' mom can fix.  I can't kiss this away.  No mother wants to know she can't take the hurt away from her child or mend any wound.  

Here is the kicker.  Her medical provider will not cover the removal.  It has been deemed as being 'cosmetic' due to the fact we were lucky that it did not damage her eye or attach to her skull.  Physically it is not a medical necessity, I'm a logical person and I can understand that.  However psychologically I think it could potentially be very harmful.  If she isn't even a year and a half yet and is becoming aware that it's being discussed and isn't normal I can't imagine what it will be like when she can talk and understand the cruel things being said.  A very well known specialist in Los Angeles gave me a vague quote of it being close to 20,000$ to have this done.  The hospital will charge as well as any specialist used including the operating doctor(s), anesthesiologist, etc.  Obviously this is much more than we can provide alone. MANY wonderful people have come up with amazing ideas and offered to help with some charity events to raise funds and reach out to people to help our little girl out.  Anything is much appreciated!  We are looking into seeing a local specialist to get a better quote so we have a goal to set.  

In another blog I will give more details on the plans that we have been considering.  I'm new at this and any advice is welcomed.  

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