I wanted to know the worst case scenario as this is how I work best. Get the bad news and then work back from there. So, after ten minutes of skirting around the edges about what course of action we could take, I asked the paediatrician straight out, “how bad is this likely get?”
He said “Well Rebecca, this is in a really bad position on Ruby’s face and it could grow to the size of a walnut.” “A walnut?” I replied with a quiver in my voice clearly evident and tears welling up in my eyes. He said “Yes Rebecca and that’s why we need to move quickly.”
There is nothing worse than being told there is something wrong with your newborn baby. Nothing. No matter how big or small, the sense of worry and stress is overwhelming. You realise in that very moment that the saying is true, all you ever hope for is a healthy baby.
Ruby was diagnosed at six weeks of age with a hemangioma, more commonly referred to as a strawberry birthmark. I’m sure you’ve seen them before as they are common, one if 15 babies will develop a haemangioma. More often than not, they don’t cause any problems and often shrink and then disappear with time.
However, Ruby’s hemangioma, despite being very small, was just on the inside of her lip. It’s one of the tricker spots to have one. They can increase in size quickly and once they start to grow, it can lead to ulceration, affecting her feeding, lead to infection, scarring and permanent disfigurement.
Now I know Ruby was going to be ok, there are far worse situations to be in, far worse. I was certainly keeping perspective on this but I will admit I was really upset. I cried a lot. Thinking about my beautiful little baby with a huge growth on her lip was really hard to deal with. Knowing how cruel kids can be in the playground and how insensitive some inquisitive adults can be, all I could imagine was having to explain what was “wrong’ with Ruby’s lip to a million different strangers everyday of her life. I really didn’t care what Ruby looked like, she would always be the most beautiful baby in the world to me, but I knew others would.
My paediatrician referred me to the leading doctor in this field, Dr Philip Bekhor. He is usually booked out months in advance, but because hemangiomas can grow very big very quickly I was lucky enough to get Ruby an appointment within the week.
Dr Bekhor is brilliant and he advised us the best course of action would be start Ruby on medication because as the paediatrician had mentioned, once the lip muscle is stretched by the birthmark it never returns to normal. Dr Bekhor said he’d rather start the medication so he didn’t have to perform reconstructive surgery years down the track.
Remember she’s only 6 weeks old at this stage and I’m just getting used to being a new mum. Everything at this early stage of parenthood is a big deal and you worry about the tiniest things all day, everyday.
To receive the medication, Ruby had to be in tip top shape. She had to undergo a full physical and have an ECG to check her heart was 100 percent before being put on the medication. Taking her to another doctor and have her scream for 30 minutes straight while she was poked and prodded was quite the experience. Good news though, she was cleared to begin treatment.
It was certainly a big decision but we went ahead and I’m so glad we did. In a matter of a week, Ruby’s hemangioma had flattened and shrunk. She didn’t suffer too badly from any side effects and her body tolerated the medication very well.
Ruby was on her medication until she was 12 months old. We keep a close eye on it but so far so good. It’s still visible on her lip but the specialist believes we’ve done enough to stop its growth and halt any long term nasty effects.
As I mentioned earlier, I know we were lucky, there are a million and one things that can be wrong with newborn babies. Having a hemangioma pales into insignificance when compared with many of these but it was still a worrisome time for us and I’m still so relieved and thankful to the doctors who helped us along the way.
Article by Wattle Health Brand Ambassador, Rebecca Maddern.