Haemangioma Birthmarks: Ellie’s Story

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When I was born, I had a small, faint, pink birthmark in my hairline which disappeared at some point when I was a child. My brother had a similar mark and my sister had a slighter darker, albeit still pink, birthmark on the nape of her neck. So when my midwife announced that she had found a birthmark on my daughter, I wasn’t surprised. That changed when I saw it. I expected to see something tiny and pink. Instead, I saw a large, red, slightly raised birthmark on my daughter’s back.

No one was particularly concerned, we all know that birthmarks often fade after some time and it was on her back so it wasn’t very noticeable, however my midwife wanted it looked at by a paediatrician before my little girl was sent home. We had hoped to leave the same day but shrugged it off and my husband went home to sort everything for our return in the morning. A while later, a paediatrician came… and left. She hadn’t seen something like this before and wanted it looked at by the paediatric registrar instead. At that point I realised this birthmark wasn’t common. When the paediatric registrar came to speak to me he seemed unconcerned. He advised that it was just a birthmark and the likelihood was that it would fade in time. However, there was a small chance that it could grow. It may become more raised and more red. If this was the case, I needed to take my daughter to see a GP and they would need to refer to a hospital. There was a chance that she may need to go to Great Ormond Street Hospital for treatment. Not exactly what a first time mum wants to hear when she’s alone in a recovery room at 2am with her brand new baby.

Fast forward three weeks and it had grown. It was now a very bright red and so raised that it had become what I can only describe as textured. This was the least of our worries, though. As well as the birthmarks growing on her back, new ones had appeared on her face. Did you know that birthmarks can appear after birth? Neither did I! The marks had appeared when she was a day or two old but looked very, very faint. We assumed we just hadn’t noticed them at birth due to the vernix she was covered in (she was a tad early). Over the weeks, they grew very rapidly. It was at this point that we started to panic a bit. We had absolutely no idea what we were looking at, whether they would continue to grow or if they were dangerous for our baby.

It was a Friday evening so I had to wait 2 long days to make an appointment with a GP. In the meantime, the only thing we could do was try to educate ourselves. We found a page dedicated to birthmarks on the GOSH website which explained that there are a number of different types of birthmarks. Our daughter’s birthmarks are called haemangiomas. A haemangioma is a collection of blood vessels which form a lump under the skin. They are nicknamed “Strawberry birthmarks” because the surface often looks like a strawberry (red and textured). Until we came across this, we had no idea that there were so many different types of birthmarks. I also didn’t realise that the causes of birthmarks are still relatively unknown. Birthmarks of various types are caused by abnormal growth of blood vessels. GOSH states that this is from a change in the gene in early pregnancy when the blood vessels are forming but it is unknown exactly why this is. There is also a wonderful charity called the Birthmark Support Group. When stating the causes for birthmarks they simply stress that it is not down to anything the mother has done during pregnancy. Some speculate that it is genetic but I haven’t yet come across any evidence for that theory.

After researching what a haemangioma is, we wanted to know if it would require treatment. There isn’t really a clear cut answer for this as it depends on the location(s) of the mark(s), the size and the amount of haemangiomas if there are multiples. The mark on my daughter’s back wasn’t of concern to us. It was purely cosmetic at this stage. The marks on her face were a different issue. Many of the marks were very close to her eye and one spread over part of her lip. If these grew too large they could affect her eyesight and the formation of her mouth, which in turn could affect her ability to feed properly. We also discovered that there was another issue: ulceration. Fortunately, my daughter’s haemangiomas have never ulcerated so I couldn’t tell you exactly what happens but I know that she was as risk when, weeks later, the mark on her back got so large that it rubbed against itself as it fell within the folds of her neck. The rubbing created sores and we had to keep the area well moisturised. Ulceration commonly occurs in haemangiomas in the nappy area, where rubbing is much more unavoidable and it’s almost impossible to keep the area clean and dry.

The last complication we came across, which was the most concerning to us, was PHACES. PHACE syndrome stands for Posterior fossa brain malformations, Haemangioma, Arterial lesions, Cardiac abnormalities and Eye abnormalities. People with PHACES normally have two or more of these issues. Babies with a haemangioma already have the ‘H’ so they need to be tested to rule out the other issues. In a nutshell, PHACES can come with cardiac, eyesight or developmental issues which requires careful monitoring and occasionally treatment, depending on the type of issue and the severity. Often, the issues caused by PHACES affect the child’s lifestyle as opposed to being a treatable issue.

When our little girl was 12 weeks old she was seen by a paediatric cardiologist at Ipswich Hospital. By this point, the marks were all bright red and very raised. The facial marks were posing a serious risk to her feeding as the mark on her lip was very large and the marks near her eye meant that she could no longer open her eye fully. In fact, she often wouldn’t open it at all. Upon first seeing her, he immediately advised that we opt for treatment. We were incredibly fortunate and my daughter’s doctor had actually seen and treated children with similar haemangiomas so it wasn’t necessary for us to travel to a specialist birthmark clinic for treatment (the nearest being GOSH). Interestingly, just 10 years ago, the only option for treating a haemangioma would have been surgery. However, a few years ago, a trial took place for a drug called propranolol. Propranolol is typically used as a drug to lower blood pressure in adults but someone discovered that it shrinks birthmarks! Propranolol is the typical treatment for birthmarks now, although I am aware that other variants are available. Surgery, including laser surgery, is only considered if these are unavailable, unsuccessful or not appropriate.

Before she could start on the propranolol, tests needed to be carried out to ensure that the drug wouldn’t be detrimental to her overall health. She had an ECG, a blood count, blood pressure tests and an echocardiogram. All of these tests came back with the results we wanted and she was given the go ahead for the medication. The process of putting a child on propranolol is drawn out and tedious but we saw results immediately. This isn’t an exaggeration. Within just an hour of leaving the hospital my daughter was opening her eye fully again. We were absolutely over the moon.

In addition to the treatment, she also had to undergo a number of tests to rule out PHACES. These predominantly included ruling out the possibility of internal birthmarks. Yup. You can have internal birthmarks! The ECG and echocardiogram had ruled out any cardiac issues but she also needed to see an ophthalmologist to check her eyesight hadn’t been affected and she had a number of ultrasounds. An ultrasound was carried out on her abdomen to check there were no internal marks on her vital organs. An ultrasound was carried out on the mark on her back to check how deep the birthmark was and ensure it hadn’t attached to her windpipe. Finally, she had a cranial ultrasound which is an ultrasound through a baby’s soft spot to check for marks on the brain. This was something I didn’t even know was possible! Fortunately, due to her young age, the procedure was successful but if it hadn’t been, she would have required an MRI. An MRI would most likely have required sedation or general anaesthetic, so we’re very grateful that this wasn’t necessary.

My daughter is now approaching 10 months old and has been on propranolol for over 6 months. Most people don’t even know she has birthmarks. As her mother, I can still see the marks on her face but these are little more than areas which are a little more veiny than normal and look almost like freckles. The mark on her back is still partially visible but has reduced in size and colour dramatically.

Overall, our daughter has been extraordinarily lucky because her marks were noticed early, we received a lot of support through wonderful medical professionals and she is responding so, so well to treatment. We’ve also been lucky to have received a lot of positivity from our family and friends. Approximately 80% of babies are born with some form of birthmark. Approximately 10% of babies are born with a vascular birthmark (such as a haemangioma). Despite this, I found that the diagnosis and treatment of my daughter’s haemangioma was a very lonely time for us all. Fortunately, the Birthmark Support Group provides lots of information, including how to get a referral, information on the different types of birthmarks and help with coping with the reactions of others. They also have a great support network where we were able to connect with other parents who could relate to our experience.

My daughter’s birthmarks are all but gone now but we have had a ragdoll made with birthmarks that match hers so that as she grows we can teach her to celebrate them. I am glad that she no longer faces the issues that the birthmarks were causing, however it is a little odd seeing her without the marks that made her so unique. 

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