Haemangioma Awareness Day – My Story

May 15^th was Haemangioma Awareness Day and so I thought it was only fitting to share some information of this condition along with my own story. Please note: my blog post is not about giving any medical advice, it is merely some information I have researched and compiled (the sources are included at the end of the post) in order to raise awareness. Despite them being common, they appear to still be widely unheard of.

Haemangiomas – An Overview

A haemangioma is a benign (non-cancerous) tumour consisting of a collection of small blood vessels under the skin. They often appear as raised red marks on the surface of the skin – commonly known as “strawberry marks” as they look similar to that of the surface of a strawberry. There are different types of haemangiomas: superficial; deep or a mix of both. Superficial haemangiomas are normally a raised, red area on the surface of the skin (as aforementioned – known as “strawberry birth marks”. They often feel warm to the touch due to how close to the skin the abnormal blood vessels are. On the other hand, deep haemangiomas can look bluish in colour because, as the name suggests, they run deeper and appear as a lump instead.

Haemangiomas usually develop within the first few days to weeks after the birth of the baby, and often grow rapidly for the first several months. Most haemangiomas are harmless and tend to stop growing after this period, and then eventually begin to shrink. While the cause of haemangiomas is still largely unknown, there are a few factors which can make them more likely to occur. They appear to be more prevalent in:

• Female babies
• Babies who are born prematurely
• Babies with a low birth weight
• Babies which are part of a multiple birth – i.e., in twins, triplets etc.
• Caucasian babies

They are not hereditary, but the causes of haemangiomas are still largely unknown or not yet understood. The abnormal proliferation of the blood vessels is again unknown, but it is believed they may be caused by certain proteins produced in the placenta whilst the baby is in the womb.

Haemangiomas can also occur internally as benign tumours which affect the organs – such as on the liver, parts of the gastrointestinal tract, the respiratory tract and even on the brain. Although they are often asymptomatic both during and after their formation, this is dependent on the size and the location of the haemangioma. For example, a haemangioma of the gastrointestinal tract may cause signs such as nausea and vomiting, loss of appetite and discomfort of the abdomen. Internal haemangiomas are usually diagnosed using imaging tests such as ultrasounds, CT and MRI scans.

There are multiple different treatment options available if required nowadays (there appear to be more available now than when I was ill as a baby 25 years ago). Also, to reiterate, most haemangiomas do not require treatment unless their location or size is or could potentially cause issues, such as if they are located at the eye, mouth, neck or around the nappy area; or if they are ulcerated – like mine was. Mostly, haemangiomas can be left to their own devices and after the growth period, they ‘rest’ (stay the same size) and then gradually shrink and fade away. They are usually gone by the time the child is 10 years old, although they can leave some scarring or stretched skin in their wake.

Beta blockers are commonly used to slow the growth of haemangiomas. The commonly used oral beta blocker is Propranolol; while an example of the topical one is Timolol gel, which can also be used to help treat ulcerated haemangiomas.

While Corticosteroids were previously used as a method of treatment by being injected into the haemangioma to decrease the size and to reduce inflammation, they are now rarely used. Although, they are still considered an option if beta blockers cannot be used.

Surgery can also be an option if the haemangioma is small or for internal haemangiomas, such as hepatic ones (haemangiomas affecting the liver) – particularly if they are affecting the organ or if the patient would benefit from the blood supply to the haemangioma being tied.

Laser treatment is the method I was treated with (after several months of… well, medical torture from the sounds of it, but more info on that will follow shortly). The laser treatment can be used on surface haemangiomas to improve the appearance and decrease the redness.

My Story

As I was a baby when all of this occurred, I am fortunate enough not to remember any of the pain or trauma. Although left with a physical yet, painless scar, I am grateful not to share any of the memories of the pain, heartache, frustration and struggles that my brave parents live with. The details I know have been told to me over the years as I’ve grown up and become more and more inquisitive as to what my infantile experience was like.

My haemangioma appeared as a small, strawberry-like mark on my left shoulder a few days after I graced the world with my presence. It quickly covered the whole of my left shoulder and part of my chest. Once the tumour was massive, it ulcerated and haemorrhaged multiple times, and due to the pain, I couldn’t eat. My mum told me recently that my little hands and feet were always freezing, but also that my face around my nose, mouth and chin would go completely blue. We believe this was likely due to the large blood supply going to the haemangioma itself on my shoulder and thus reducing the blood supply around my body. She said the skin at the haemangioma site was always roasting hot because of how close to the skin the abnormal blood vessels were.

After being lied to for months that there was a specialist in the hospital in Glasgow – which had unfortunately become my home – my parents had thankfully been doing their own research and eventually made a revelation. There was in fact only one specialist in the UK at that time and he worked at Great Ormond Street Hospital (GOSH) in London. My mum’s inner lioness was forced to roar at the staff until they finally agreed to allow me to transfer down there for proper treatment. If it hadn’t been for their fierce love and innate need to protect me, I’d have spent many more months in that hospital, being virtually tortured as they butchered my poor baby feet, using them as pin cushions in feeble, long-lasting and unsuccessful attempts to take blood, which left me screaming, purple-footed with bruising and my mum beyond distraught. They also dressed my wound so poorly with adhesive materials which removed the fresh layer of skin from my shoulder each time they changed it. Sticking an adhesive dressing to the delicate, thin layer of skin of an ulcerated haemangioma is like sticking duct tape to a butterfly’s wing and then ripping it back off. Due to the ulceration, and how close the blood vessels are to the surface of the skin, my haemangioma haemorrhaged multiple times and also became infected, which meant I received a lot of antibiotics too. My dressing changes were also poorly timed and so the torment regularly missed the times I’d be most protected by pain medications. Once again, my mama bear had to fight them off and refused to let the torture ensue.

I can see the trauma imprinted in my mum’s protective eyes as she tearfully recalls the horrifying ordeal whenever I ask questions, guiltily eager to fuel my curiosity of such a substantial period in my life that I have no first-hand memory or knowledge of. Fury flashes across her face and her hazel eyes well up with rage and unmistakable heartache as she tells me again about how some of the nurses ignored my screams during these horrific dressing changes and, instead, discussed whether they’d order pizza or Chinese takeaway for dinner. The worst part was, my screams were not normal, infantile cries. My mum describes how they were my heart-wrenching response to pain so severe that my eyes would eventually roll back in my head and I’d literally pass out. How any parent is supposed to deal with that, I’ll never know, and I honestly pray that I’ll never have to find out.

Whilst I’m left with a physical scar, I was far too young to have any sort of recollection to the pain and suffering I endured. However, my poor parents have been left with the mental scars and devastating memories of the anguish. My mum and dad fought in my corner every single second of every single day until they could get me the best medical care that I needed. I truly believe I’m still here today because of their love, support and undefeatable strength.

At GOSH, my mum, understandably, freaked out at the mention of them doing blood tests. Eventually, a lovely nurse called Evette managed to sit my mum down and calmly ask her specifically what it was about taking my blood that she had problems with. Upon my mum’s disclosure of what they’d put me through back in Glasgow, a horrified and bewildered Evette reassured my mum that they were only going to use a tiny butterfly needle in my arm or hand instead. GOSH also used special dressings that do not stick to the wound. This is also where I received the laser treatment which at long last, finally alleviated my pain and suffering. Gradually, the staff encouraged me to play with food in the hopes that I’d put it in my mouth and begin to eat on my own. Due to the unbearable pain I’d been in for so long, I’d been tube-fed extra calories. A tube was administered through my nose, down the back of my throat and down to my stomach to ensure I still got all of the necessary nutrients and calories a growing baby needs. My mum was allowed to take me home from hospital at times on the condition that she was able to insert the tube and feed me by herself. The true heroine that she is, she wouldn’t do anything to me that she hadn’t experienced herself. This brave woman actually administered a feeding tube  to herself so she knew exactly what I’d be experiencing when the time came for her to do it to me. If that doesn’t make her one of a kind, I don’t know what does.

After the laser surgery, I was pain free after six long months. I could smile. I could laugh. I could play. I was able to start reaching the normal milestones and develop and grow like other healthy babies do. My mum and dad could breathe again.

As aforementioned, I have been left with a large scar across my shoulder. However, as you can see from the photos I have included, the raised skin levelled out the redness vastly reduced, although there is a small, tight fissure which is where the haemangioma had ulcerated. We believe the extent of this scarring was potentially worsened by months of the incorrect dressings being applied at the first hospital. The dressings initially being used shouldn’t even have been allowed in the same room as an ulcerated haemangioma never mind plastered on top of one.

There were times growing up, where I was embarrassed of my scar – probably just because it made me “different”. I was lucky enough to not be bullied because of it – kids made comments now and again but my parents taught me from a young age to respond by saying: “It’s my birth mark. It’s not sore, I was born with it and it’s just part of me.” This simple explanation sufficed on most occasions and the kids went back to playing. My scar actually looks very similar to that of a burn, which is often what everyone assumes it is.

One occasion in which I was very self-conscious was the lead-up to my high school prom. I had a beautiful deep purple dress (as above – a similar shade to a Cadbury’s Dairy milk wrapper ), but it was completely strapless. My shoulder was going to be fully on display to everyone and in all of my photos… I spoke to my mum who was very understanding of my self-consciousness and so, after a trip to the doctors and a dermatology referral, I had an appointment for a trial of specialist cosmetic makeup with the dermatologist. After a successful appointment, the correct shades were ordered and eventually delivered. However, once prom day itself arrived, I didn’t use them. Coincidentally, in the interim, I had been writing a personal reflective piece for my Advanced Higher English coursework regarding me being self-conscious regarding my scar, and it had somehow proven quite therapeutic. By prom, I no longer needed the makeup. Something within me seemed to have shifted. I was proud of my scar. I now view it as my tiger stripes and like to think it reflects my inner strength even from when I was a tiny baby.

I quite recently joined a Haemangioma support group on Facebook in the hopes that I could reach out and perhaps provide a sliver of reassurance to some parents who are facing similar situations with their own children to show that things can be ok. Their child has a good chance of growing up leading a normal life, like I have. Sadly, from many of the posts I’ve seen, it appears that many doctors and hospitals are still relatively clueless in treating problematic haemangiomas. From what I’ve read in this group; if you need advice or proper medical advice, a paediatric dermatologist seems to be the best person for the job.

I hope this piece of writing is a testament to a few crucial things: firstly, to how incredibly amazing my parents are – my mum for being a lioness at my side every single day, fighting my corner with my dad who was splitting his time between the hospital and still having to work so we still had a house to eventually go home to; my grandparents who provided support in any way they could and particularly my dear Nanna who drove six hours up from England to spend a couple of nights in hospital with me to give my parents some well-deserved reprieve. Secondly, how unbelievably lucky I am to have been born to such strong, loving parents, and how grateful I am to have been able to receive effective treatment. Although this wasn’t the case for the first few months, I fully respect everyone who works really hard in the medical profession – irrespective of their role; nurse, doctor, carer, porter or cleaner. They are not easy roles and I do respect that. However, I do also believe that perhaps not everyone is cut out for that kind of job and perhaps we drew the short straw with some of the nurses dealing with me at that time. And finally, that even if your child is currently suffering with a problematic haemangioma, they can still develop and grow like an unaffected child; and scar or no scar, they will be ok. In fact, with your support and encouragement, they will be brilliant. They will be strong and resilient. Teach them that their scars are their warrior wounds. They were strong even as infants and they will just continue to blossom as they grow.  

Please feel free to share your own stories in the comments, I’m always eager to hear of others’ experiences – even if their haemangioma didn’t cause any health problems. A few of the stories I’ve read in the aforementioned Facebook group mention children being very self-conscious of their haemangiomas or the scars or excess skin left behind and even in some cases, kids have been bullied. This really tugs at my heart as although I know how it feels, I was quite lucky to escape school relatively unscathed with comments. If anyone has a child in this position and they would like to reach out, if there is anything I can do to help, I’d be more than happy to try.

If you’ve never experienced or even heard of haemangiomas, I hope you’ve at least found this interesting and learned something new.

Thank you for reading, all the best!

Aimee x

Please see the below links for the sources of the information I have used:

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/haemangiomas/

https://orthoinfo.aaos.org/en/diseases–conditions/hemangioma

https://www.healthline.com/health/hemangioma-of-skin#diagnosis