At Least They Haven't Given Up, or Three Thursdays First

Thursday 10 January

Back in GOSH for the first time since Little S was discharged on New Year's Eve.

We had been set up with a special appointment with Dr D rather than having to sit in the normal clinic for hours.

So we went straight into an echo scan, supervised both by Dr D and by Dr F - a specialist in pediatric heart and lung transplants - and so they were both able to see the scan as it was taking place (rather than having to wait for the results) and to chat to us about various possibilities for the next few weeks.

It was a very calm atmosphere, helped by Little S being brilliant - watching 'beebies' and letting everyone just get on with their work around her.

Dr F was there to give us a better insight into why the transplant option had been ruled out by GOSH - and by Newcastle Freeman hospital, the other main centre for pediatric heart transplants - and why it was also so unlikely to work at any other hospital.

Because we weren't now just relying on GOSH - we'd started to contact other experts and centres of excellence, initially in the UK but increasingly around the world - anyone that might be able to provide us with hope for Little S. 

Before we left on New Year's Eve we'd managed to get a copy of Little S's echo and angiogram images on CD from GOSH. Then, with the help of some wonderful friends and family, we sent the disks via Hove, Luton, Ben Gurion Airport, Modiin and Zichron Yaacov to Dr B in Israel. Dr B was rather amazing and just a few hours after the disks had been delivered he had analyzed and discussed the images and called me directly to talk about Little S!

He suggested that there may be a couple of medicines that could help Little S to better manage her heart failure - and he also sent that information to GOSH.

So when we talked to Dr D and Dr F they knew that we'd been busy trying to find some hope - and although a transplant increasingly looked like a lost cause (they mentioned that GOSH hadn't even done a pediatric heart-lung transplant in the last two or three years, and that a heart transplant wouldn't work as Little S's body was used to the blood pressure it receives from a heart with a hole in it - maybe a heart transplant might work if we could find a heart with a hole in!) they now appeared to have not given up either, agreeing with Dr B's suggestion of medication, and alluding to possible 'other options' if Little S got stronger.

And, although they didn't want us to get our hopes up, they were more than willing to help us to get opinions from other experts around the world.

On the previous occasion, we'd left GOSH with the feeling that they'd done all they could and that was it - this time there was definately a different feeling: we were still on the watchlist but at least they hadn't given up.