I sometimes describe Eloise as unluckily lucky, hhmmmm that does not make sense so let me explain. Eloise's myocarditis was caused by the usually mild childhood illness Hand, Foot and Mouth Disease. It left her with severe dilated Cardiomyopathy (DCM) and fighting for her life in intensive care (PICU) After 2 very unstable weeks Eloise was due to be transferred to GOSH on Wednesday 5th June for her transplant assessment but there was no PICU bed available. So instead she flew to Newcastle, luck being with her then also as she had an amazing medical team from Bristol Children's Hospital fly with her and keep her alive , she did have other ideas!
I do believe fate took her to Newcastle as Eloise received a ABO Mismatched heart transplant, she is blood group A and her donor is a B. Again was is luck that Eloise did not have any antibodies to blood group B ? At the time she was the third ABO Mismatch that Newcastle had performed the 29th in the World and GOSH hadn't done one at this point. Newcastle took the risk, she was lucky and 11 years on it is fair to say they made the right decision . Also against the odds just 24 hours of being listed she got her heart transplant, it is hard for babies and toddlers to receive transplants, less potential donors , is that not lucky ? Three people a day die waiting for a transplant.
Eloise's heart transplant very nearly didn't happen. To be a donor baby Z had to have a diagnosis, her very brave mummy held her while she was on life support so a lumbar puncture could be performed. This diagnosed her form of meningitis . If she had a cardiac arrest during this procedure her organs wouldn't have been any good for Transplanation. Luckily this did not happen. Then when Eloise was being taken to theatre for the transplant she arrested I watched the team working on her seeing how fragile she was, how her life was hanging in the balance. They got her back safely , she suffered a further cardiac arrest in theatre, we are so lucky she survived the surgery and had no long lasting brain damage.
After 4 weeks post heart transplant Eloise was transferred to GOSH so her new team could get to know her and set up her care and appointments. On arriving we were greeted by a Dr whose first words were "Hi, you've come for transplant assessment " I frowned and felt confused surely we'd just done that bit? It seemed no one in GOSH was convinced the heart Eloise had been given was going to be any good for her ! Horrendous time of such uncertainty, I could not imagine going through everything again so soon. But after a week we did leave hospital.
The negativity towards Eloise's heart transplant from the GOSH team stayed for quite some time, years infact.No one wanted to see "The ABO Mismatch from Newcastle!" I used to hear them in clinic, lovely Dr Rees used to see her, he thought she was amazing and made me feel happier about the situation. So from a heart that was no good for her Eloise has had an amazing 11 years of good health.
We have been lucky with her post transplant for someone who is immunosuppressed she is extremely resilient, she has had mild chicken pox, two ear infections caused by swimming pools that required anti-biotics and 2 colds. She is does get the occasional cold sore but otherwise she's a healthy kid. Sometimes I get angry with the whole transplant situation , the why Eloise? Why us ? It can be incredibly hard but you have to think that right now 22 other families are waiting for the chance of life ,a heart transplant for their child, they want what we have been given. It feels wrong to be moaning. Eloise did not die waiting, she is alive.
So right now we would like some more luck please, we got literally to Eloise's 11th Heart Day unscathed living the post heart transplant dream then bang ! Two rejection episodes a grade 3 in June and a grade 2 in September. The September episode although milder rejection has caused more problems a very persistent pericardial effusion that required further draining in November and unexplained tachycardia of 130 beats per minute.
Nearly time for Eloise to face all the tests again as we need answers, her June annual review and coronary angiogram have been moved forward. So please, please wish her good luck, a turn of fortune would be good !
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