Many of you will have seen me sharing pictures and stories of some of our Alder Hey stars leading up to the Stars and Stripes Ball to raise money for Healing Little Hearts. We support Healing Little Hearts in recognition of how lucky we are to have the NHS, free healthcare and the expertise of highly trained and skilled surgeons. We honestly don’t know how lucky we are.
I don’t know how tricky Isla’s procedure was to get her pacemaker in, but I know the touch and go fragile state she was in going into theatre. I’ve spoken to some of the staff who saw her that night, with one description of her as ‘truly terrifying’. Her heart hadn’t been pumping effectively for about 12 weeks before she was brought into the world. As a result she had accumulated a lot of fluid around her organs. Her hydrops had meant that her lungs didn’t have the room to grow properly and they were squashed up into the top third of her little chest. The poor blood supply to her organs meant that some of them had started to shut down or become sluggish. Her bowel in particular was hard hit as the brain deems it unnecessary in the grand scheme of organ value. Her liver was also in a bad way. Her birth weight was 2.8kg with all the fluid on board. With all the fluid out, the endocrine team estimated her birth weight was probably about 1.6kg – 3.5lbs. She was premature (33 weeks) but she really was super tiny. Yet, Ram worked his magic. I may be wrong but I don’t imagine it was a simple pacemaker insertion.
Isla’s condition Long Qt Syndrome can’t be ‘fixed’ by open heart surgery like so many of the children we meet. Having an electrical problem isn’t something that can be solved with a scalpel. It’s kind of a double edged sword. On one hand I wish that a few procedures could make her heart better. On the other I wouldn’t wish open heart surgery on anyone. There’s so many complications that come with surgery and that is why so many people hero worship Dr Ram. His magic hands have saved so many of our babies and we’re eternally grateful. How do you say more than thank you? Words are not enough.
I’m so grateful that we had Ram there that night 20th December 2015. He had literally just come back from India doing a Healing Little Hearts camp. I remember feeling so scared. Ram remembers me shaking and crying when I signed the consent form. That’s the kind of man he is. He remembers a parent’s face when they hand their child over to him. It’s this which compels us, all the members of Team 1C, to support Ram and Healing Little Hearts. I was terrified but I knew that Isla was in the right place and was in the best hands. I can’t even begin to imagine how those parents feel when they’re terrified and have no Dr Ram and no Alder Hey. The thought of that is just unbearable. Ram is so good he’s operated on a child using the light of mobile phones! For as long as he wants to go out there and help children and families in other parts of the world, we’ll do our best to make sure he has the equipment and facilities to do so.
The Stars and Stripes Ball this year was absolutely amazing. It’s so good to see so many people who have been through hell having a great time. Some of the parents there have had to ‘deal’ with the worst thing anyone can go through. I say ‘deal’, it’s not something you can deal with. Sharing the children’s stories these weeks leading up to The Ball and reading ‘went to sleep for the last time in my arms’ breaks me every time. Why should any parent have to write that? It’s just not fair. It puts things in to perspective for me each and every time. Yet, these parents are there supporting the man who gave their child a chance, so he can give other families the possibility of never having to feel like they do. It’s heart breaking and heart warming in equal measure. It gives me faith in humanity. Naming the camps after the children who battled so bravely gives some parents comfort. They know that their baby will live on in the hearts and minds of families around the world. I love Team 1C – it’s not a life or family I ever thought I’d have, but it’s given me opportunity to say thank you, because as I said, words just aren’t enough.
The Long Cutie 