Sunday, February 07, 2010

Haemangioma - Update

 Thea’s scans all came back negative and she was started on the Propanalol treatment as well as continuing on the steroids. The steroids were steadily reduced each week until, just before Christmas, she stopped taking them completely. She is still taking the propanalol.

Thea’s breathing improved almost immediately when she was started on the steroids, although it would come back a little overnight. Since we left Gt Ormond Street, after spending nearly two weeks there, her breathing has been fine and has continued to be ok after stopping the steroids. The haemangiomas have been reducing in stops and starts. There seems to be no change for a week and then suddenly they will reduce. Since starting treatment in September the visible birthmarks on her lips and in her mouth, as well as on her ears and spine, have completely disappeared. The large patches in her nappy area and on her legs are still visible but have recently started to shrink and lighten so that, while still visible, are nowhere near as prominent as they were.  

Thea herself continues to grow normally, and she is still generally very happy apart from when we have to wake her to give her the medicine. 

More information on haemangioma and other birthmarks can be found at the Birthmark Support Group site:

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:

Thursday, January 22, 2009

Bad Login Page of the Week - Emusic

I've been meaning to start posting when I find bad login pages. They annoy the hell out of me. I understand that logging on is part of the process of creating the whole personalised, big love-in feeling that comes with returning to a site but there are times when it feels like the site just doesn't want to let me in.

Emusic is an example of where it has gone wrong but could easily be set right. When I visit emusic it remembers who I am - presumably through a cookie - and so gives me recommendations. Overall it's a pretty good service and they have some excellent music. But, whenever I "do" something, such as bookmark an album for later download or even make a purchase, I am taken to the log-on screen again. OK, fair enough, I don't mind validating that I want to make the purchase. Firefox remembers my username and password form me so all I should have to do is click on the log-on button or, more likely, press the enter key and sail straight through.

Except that the page is poorly designed. Instead of recognising that I already have an account, and that it even knows who I am, it pre-selects the "create account" option forcing me to click two things in thwo different locations. Then it follows it up by completely forgetting what I wanted to do, forcing me to do it again.

It's idiotic.

It's bad design.

Tuesday, January 06, 2009

A list of my emusic purchases

Live in Manchester and Dublin - Rodrigo y Gabriela
Violin Concerto/Company - Philip Glass - Adele Anthony
Select Classical Chinese Music - Various
Steve Reich: Music for 18 Musicians - Grand Valley State University
Shostakovich Symphony No 5 - LSO
Best of John Lee Hooker -
Soul Men - Sam and Dave
Chinese Dub - Jah Wobble
Bad Medicine EP - Liz Green
Joys of Spring - John Fairhurst
Steve Reich: Different Trains - David Robertson
Howls, Raps and Roars - Allen Ginsberg
Sound unbound - DJ Spooky
Beethoven Violin Concerto - Isabelle Faust

Wednesday, December 31, 2008

Monday, December 29, 2008

Sunday, November 30, 2008

Nano finish

Despite a higher than average intrusion of real life I managed to finish my novel for Nanowrimo this year. It was a close thing though. I found myself ten thousand words (one fifth of the target!) behind come yesterday morning. I started by spending some time planning that last ten thousand words and then got stuck in. I wrote six and a half of them yesterday, leaving me with a smaller target to hit today. I kind of went for it because I knew I would be out for this afternoon at my parents to see Debbie and family. And it paid off.

But is it any good? Well, probably not. It's quite a different story to ones I've been writing recently. It's not science fiction, but more of a straight, literary novel set in China in the early 20th Century. A time and place that I still find fascinating, and probably stranger than anything I could dream up for SF, it gave me a historical structure that always meant I could find some inspiration. The main pattern of the story came to me pretty much fully formed and I've mostly stuck to it. Despite deviations here, and the odd surprise, it's pretty much the story I had in my head and, looking back now I think that yes, it is good. Not in a letting anyone else read it kind of way, just yet. At the moment it's more like a pre-viz, or storyboard, for a movie. All the pieces are there, sketched out, but the actual film is yet to be shot. That's the next stage. Move it from the flat, cartoony writing that describes what I want it to be into the thing that it actually is. I'm looking forward to it. But for now it's time to read that Hellboy comic I treated myself to yesterday.

Thursday, November 27, 2008


From Doonesbury -

"Marshall Plan, Louisiana Purchase, Race to the Moon, S&L Crisis, Korean War, The New Deal, Invasion of Iraq, Vietnam War, NASA."
-- list of government expenditures which, combined, are still less than the current bailout

We could probably end poverty and go to Mars if we closed all the banks. Hmmm...