Pregnancy & Birth Stories

My Birthmark Story

by Iisa Halmineva

I'd like to share with you the story of my daughter and her birthmark, and maybe offer some words of reassurance and the experience I've gathered during the first two years of her life, now that we've overcome our worst nightmares.

Little Mari was born in September 1998 in Finland, a perfect baby girl. A few weeks later the tip of her nose started turning blue/purple, and people started asking if she'd been too long out in the cold (winter approaching). I was worried sick, but the doctor told us it's just a birthmark called hemangioma, nothing to worry about, and nothing we could or should do about; it'll go away later.

Mari was three months old when we moved to KL, and around then her nose started growing quite fast, the colour turning dark red/purple, especially when she was crying.

Birthmarks are quite common in babies. It's estimated that every fifth baby has one, small or big, but you wouldn't usually notice them under clothing.

Having one right in the middle of your face, and a big one, is quite rare. At eight months the nose was already obstructing her eyesight, and the comments were getting more and more frequent: "What happened with the nose?", "What a big, fat, red nose!" and "What did you eat when you were pregnant?".

It's not what I did or ate. There is no explanation, birthmarks just happen. But obviously it was now time for something else than waiting and seeing.

We went through a GP, a paediatrician, then an Ear, Nose & Throat specialist in Gleneagles and were finally referred to a doctor at the General Hospital. Mari remained his patient for almost a year. First we tried a six-week course of steroids. The nose did get smaller temporarily (sometimes it helps permanently), but the side effects were awful: crankiness, crying, a huge never-ending appetite followed by what's called a moon-face. Though we were offered more steroids later, in the form of injections, I declined.

In the summer of 1999 we consulted a plastic surgeon in Finland, who recommended an operation, and were put on a waiting list for our next trip.

Then we tried laser treatments to improve the colour and reduce the size of the hemangioma. After nine treatments, all under general anesthesia every three weeks or so, I started questioning even this approach. The colour had improved a lot, but it was still the same big fat nose. Why, I didn't understand yet.

This Spring I started getting some second opinions. A local plastic surgeon said the worst option would be an operation: she would never look normal, we'd just create a big, life-long scar. We're trying too hard, he said, we must accept it as it is and wait and ignore the social and emotional pressure. He also felt the laser treatments were useless.

Another Ear, Nose & Throat specialist felt it'd be OK to operate, and until then continue the laser treatments. He added that the lesion could have been taken care of once it appeared, before its growth! Our doctor at the General Hospital was scheduling the next treatments, but couldn't tell us how many more would still be needed. Our Finnish surgeon had scheduled Mari's operation for June. Friends and relatives also had many different opinions.

At this point I was totally confused. As a parent and with no medical training I was nevertheless to make the final decisions about her treatment, right or wrong.

Mari was in the meantime growing and becoming more and more conscious about what was going on, the treatments, doctors, hospitals, and recovering from the general anesthesia became more difficult each time. Although she didn't speak yet or understand the thoughtless comments of total strangers, she must have wondered why people suddenly stopped smiling when looking at her, some looking quite appalled.

Very, very fortunately our doctor had recently attended an international conference about birthmarks in the US, and he gave me the name of Dr Milton Waner, a specialist in Arkansas. I found, ordered and immediately read a book by Shannon & Marshall with Dr Waner called "Birthmarks - A Guide to Hemangiomas and Vascular Malformations". It's not a medical textbook, but a guide dedicated to children and families connected with birthmarks.

Finally I understood quite a few things: it's really not what you or anyone did or didn't do during pregnancy. The right diagnosis is essential to determine the right treatment. Hemangiomas are one thing, and then there are many kinds of other vascular malformations, which can be difficult to tell apart, but develop differently and require different treatment.

Mari's case was quite rare: hemangiomas can be superficial or deep, but hers was compound. That's why the laser worked for the colour, ie the superficial part, but it didn't and couldn't reach the deep component. Being such a rare case I also understood those contradictory medical opinions. Hemangiomas almost always appear only a few weeks after birth (that's why the word birthmark can be confusing), grow during the first year and then start slowly involuting. Big, deep hemangiomas like Mari's can take quite a few years to disappear, or they don't disappear completely, no matter how long and hard you wait.

The part of the book I appreciated most was the chapter about emotional aspects. It even gave helpful tips about how to cope with the staring strangers. "Every child has the right to look "normal", and every doctor has the responsibility to see that everything is done to give each child this opportunity. The key to minimising the emotional trauma is early treatment and intervention".

I couldn't agree more. After a quite big, but in the end successful, first operation and the initially difficult period of healing, my punchline to other families facing a similar condition would be: don't give up and don't be discouraged. Ask for second opinions. The doctors these days can do wonders, though finding the right specialists can be tough. Go for early treatment: why wait until school age, like I was told so many times? Little ones still understand how they are looked at, even when they cannot yet express themselves. And, be proud of your beautiful, brave little ones!

Mari is now a healthy, happy almost two-year-old with a strong will bigger than herself, curly blond hair and capturing eyes people start to notice beyond her nose. And she will have a normal toddler's life until the age of four or five when she'll have the final "finishing touch" surgery.

[Disclaimer: These series of articles are based solely upon ibu members’ individual experiences of giving birth in Malaysia. They are not intended as an endorsement or recommendation by ibu of any hospital, obstetrician or paediatrician, or in any way guarantee that other experiences will be similar.]