Let’s talk about hemangiomas
May is Vascular Birthmark Month. Disabled Living’s Business Development Coordinator, Laken, from the Kidz to Adultz Team, talks about her experience with her daughter Theia who has a nasal tip hemangioma.
Before having my daughter in June 2020, I honestly did not really know much about vascular birthmarks. I ignorantly just thought they were a flat coloured mark on the skin. Oh, how was I wrong…
What are vascular birthmarks?
“Vascular birthmarks are caused by abnormal growth or formation of blood vessels and vessel cells. There are two main types of vascular birthmarks: hemangiomas (strawberry birthmarks) or vascular malformations. Hemangiomas are caused by overgrowth of the cells providing the lining for vessels in the affected area.” – The Birthmark Support Group Website.
My daughter Theia was diagnosed with a mixed Hemangioma around 3 months old, here is our story and journey during treatment…
Theia’s hemangioma appeared when she was around two weeks old. She had a faint red mark with a blue/purple tinge on the tip of her nose. We visited our GP who told us he did not know exactly what it was but presumed it was a birthmark. He told us it was nothing to worry about and that he would refer us to the paediatric team for a second opinion. Another four weeks had passed, I still had not heard anything regarding our referral and Theia’s nose had become much worse, so I started to research myself.
Looking at the different types of birthmark I instantly knew Theia’s was a mixed hemangioma. I joined the Birthmark Support Group UK Facebook page and asked for advice. The help and support we received was amazing – I was advised to take Theia for a second opinion as the placement of the hemangioma could have caused problems if it carried on growing.
A couple of weeks later we were seen by Dr Tim Clayton at Royal Manchester Children’s Hospital. Theia was prescribed Propranolol and we started with the medication straight away. Fast forward six months down the line, the results have been amazing, the blue/purple colouring has now disappeared, and she has a faint red mark on the tip of her nose which is still fading daily!
At our last appointment, the doctors were impressed with Theia’s progress and have now stopped her medication. The red mark should carry on fading as she grows and hopefully the hemangioma will not start to grow back.
Birthmark consultants recommend treating hemangiomas on the face with Timolol or Propranolol to prevent growth especially if on the nose (which may affect breathing), around the mouth (to prevent feeding difficulties) and close to the eyes to prevent sight problems.