Guest: Kayleigh’s Haemangioma Story

Guest: Kayleigh’s Haemangioma Story

Guest: Kayleigh’s Haemangioma Story

 

Kayleigh​​ is a 25 year old stay at home mother of two girls living in Portland Oregon. This is her daughter’s haemangioma story:

 

Noticing a Mark

My first born daughter was born with a big bright spot on her bum. I remember the midwives handing her to me right after dad clipped the cord, pointing at the perfect, quarter sized circular stain and telling me it was a hemangioma. I had never heard the term before. They told me it was just a fancy birthmark and that it would probably shrink/change shape throughout her growth. I paid no mind to it as I was told it was nothing to worry about. During a diaper change when she was about 4 months old I noticed a small circular scab on the birthmark. Paranoid and terrified that my baby had some crazy virus I took her to the doctor only to have them kind of shrug and tell me that perhaps I wasn’t cleaning her well enough during changes. I reassured them that this didn’t seem like a rash problem so they referred me to a dermatologist who specialized in hemangiomas.

An Ulcerative Hemangioma

It took 6 weeks to get an appointment with them but was told she had an “ulcerative hemangioma” (don’t google image this unless you want to cry) and was given a prescription cream called Permethrin to use in the meantime (suggested by the dermatologist). Two days of use and the small scab spread to the entire birthmark. It looked as if someone had taken a cigar and burned her. Diaper changes became torture. Due to the location of the wound, anytime she peed or pooped it would cause her an extreme amount of pain (think salt in a wound). I researched and researched and found almost no help. In fact most of the information I did find was from medical studies that were testing different treatments, all with varied and inconsistent results. Because the wound grew so fast I stopped using the permethrin cream and instead started treating it at home with epsom salt baths and zinc cream over the top to keep it protected.

Dermatologist

When we finally got in to see the dermatologist I had the ulceration almost completely scabbed over and on it’s way to healing. He asked if we had used the permethrin, I shared our experience with him only to be kind of scoffed at, like her reaction the medication was improbable. During examination he broke open the wound and took swabs to it, baby girl screaming the entire time. I was livid, asking why he had to break through the scab and he assured me that it was necessary to take samples to make sure there wasn’t an infection and then gave me a prescription for antibiotics anyway. (Ugh) I left the dermatologist furious that I even went. Furious at myself for letting them cause more pain and furious at them for doing it so irresponsibly. This was supposed to be a specialist! Someone who could really help her! Her wound, after being broken open again, re ulcerated. I felt defeated and helpless, afraid my daughter would be in pain forever. (Dramatic I know, but it was so terrible) I decided to just continue to treat it at home like I had been and to only take her back in if it wasn’t healing. We went back to our light epsom salt baths every other day and this crazy thick prescription strength zinc paste and I got my hands on these “fake skin” bandages that they use for 3rd degree burns. After about 3 weeks it had finally scabbed back over and started peeling, leaving behind a 50 cent piece sized white circular scar where her cute bright pink spot had been. She is now 2 and a half years old and hasn’t had any problems with it since. Her scar is a funny little reminder of a not so funny time. 

 

Thank you Kayleigh for sharing your daughter’s haemangioma story. Kayleigh can be found on Instagram: pixiebug_

If you would like to get in touch about sharing your experiences of haemangiomas, or want to make sure you know when the next post is live, please visit our Contact page.

 

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