Monday, September 28, 2009


A couple of weeks after Thea was born she developed what looked like a rash on her leg. The midwife said to ignore it and it should go away after a couple of days. It didn’t, it got worse and seemed to spread further over her leg and also behind her ears. The midwife sent her straight to the GP.

The GP didn’t know what it was either. He gave her some cream and booked an appointment for her three days later. There was no improvement and so he sent her to A&E at the local hospital. There they diagnosed it as probably being haemangioma, also know as strawberry birthmark. They took some photos and booked a follow-up appointment and an ultrasound but did not really give us any information. For that we turned to the Birthmark Support Group website (, which is an essential resource for any parent who wants to know more. There we read a little about how for most cases it is best to leave haemangioma alone – it grows for a few months but then starts to disappear and is usually completely gone after a few years. But there are also warnings – that there is little real understanding or knowledge in the general medical community about treatment of haemangioma, that they can become ulcerated and very painful and, most importantly, if they appear on the mouth, around the eyes, ears or nappy area then there can be complications.

By the time we got the appointment with the paediatrician (probably only a couple of weeks later) T had developed a large mark on her leg, a small one in her nappy area, small patches around and in her ears and on her lips. The paediatrician discussed it with us, confirming a lot of what we had learnt from the Birthmark Support Group and saying that we really needed to see the plastic surgeon and seeing him was a bit of a waste of time. He also, because we asked for it, said he would get an ENT appointment to check her mouth.

The plastic surgeon appointment came though quickly, which was good, but the appointment itself was terrible. There were two other doctors in the room who were not introduced to us and we were generally made to feel quite intimidated. The surgeon refused to answer several of our questions and gave us information that was wrong including saying that if the marks became ulcerated it would be a good thing and that the marks on her lips would not become ulcerated; Her lips can become ulcerated and if they do then they can stop her from feeding because of the pain and are difficult to heal. It seemed like the answer he gave was based on a guess rather than any real knowledge. A recent news item in the MEN ( seemed a warning of what was going to happen to us if we left it like this. So Zak decided to get in touch with Gt Ormond Street Hospital. She emailed some photos and they said we should come down as soon as possible. We arranged that for Wednesday 23rd September. They organised the referral from the plastic surgeon. We still had no appointment with ENT. They said that she would be assessed and hopefully put on a new drug that is being used for treatment of strawberry birthmark and that we should be out in three or four days.

Then Thea started rasping, her breathing became noisier. She has always been a noisy and active baby but this was different. The sound would come and go. Unfortunately when Zak took her to the GP it was quiet. The GP said it was likely a bit of phlegm and common in babies. That kind of felt like enough that we should not worry about it.

We did receive an ENT appointment for the middle of October, but then a few days before we were due to come to London they called and asked if we could come in earlier. We had a holiday booked and said we were going to GOSH the next week so they decided that we did not need to go in then.

While we were away for the weekend T’s breathing noises continued to come and go and, very gradually, got worse. I was starting to get very concerned about it – her cry was very raspy, her breathing seemed ok but often noisy and very occasionally she would seem like she needed to catch her breath. It was only another day before going to GOSH.

When we got to London we were received with the greatest amount of attention and speed I have ever received in the NHS. The nurses and doctors here have been wonderful, attentive and, above all, have known exactly what is going on and what needs to be done.

They picked up on her breathing. They said this could be down to a birthmark in her throat and that it needed to be checked out asap. They called in their own ENT people and Thea was put on a waiting list so that she would hopefully be looked at the next morning. As she would have to be under general anaesthetic this meant no feeding from 6am. They also noticed something else we had previously been told not to worry about – a scar on her stomach which she has had since birth. So now we had not one, but two additional things to be concerned about. They started doing more tests – for her heart, and decided to prescribe steroids to try and start treatment of her birthmark to try to reduce the one in her throat as soon as possible.

The next morning we got the slot to check her throat. They confirmed the haemangioma there was blocking off her airway by about 60-70%. The steroids have worked quickly to reduce her rasping so immediate surgery is not required (but we have a follow up in a couple of weeks to make sure).

That day we also had ultrasounds of her spine and internal organs. Those, and the results from her heart scan, came back as fine. This was a relief as it seriously reduces the chance of the other thing the doctors are concerned about which is called PHACES syndrome (the S is new and and stands for Scar).

We are not entirely out of the woods yet. Thea still needs to have an MRI scan of her brain to confirm that there is nothing there and that she will be able to go on to the new drug instead of steroids. This new drug, propranolol, is more effective than steroids but can’t be used if there is a chance it will reduce blood flow to the brain (for obvious reasons). As MRI machines are very booked up we don’t know when this might happen and because of her breathing (it still comes and goes) the doctors don’t want to let her go yet. And even if they do we are already looking at regular follow on appointments for the next year, at least.

Fortunately Thea has proven herself to be a happy soul, rarely complaining about the prodding and starving she has been put through. But the main thing is that Thea is getting the best treatment she can get and the GOSH team here are absolutely fantastic. Hopefully we will be able to go home soon once everyone here is happy with her progress and we have the MRI out of the way.

Great Ormond Street Hospital: