Born on the 7th September 2000 at 32 weeks, Eloise weighed a healthy 4lb 15oz. She was fit, well and heart healthy. She had had an echo during my pregnancy and one at birth because I have a mild CHD however these tests showed that Eloise had a normal heart.
Eloise thrived and grew into a happy toddler. In April 2002 she caught hand, foot and mouth virus very mildly from Nursery, however she wasn’t really ill.
Or so we thought.
On the 23rd of May she woke up unwell. Her breathing was laboured and she had a blue tinge to her lips. I rang the GP for advice and he suggested taking her to Bristol Children’s Hospital to be assessed. Off I went thinking worse case scenario she would be admitted for intravenous antibiotics to treat a chest infection. On arrival Eloise was assessed by a nurse and then a doctor; her observations appeared normal and so she was sent for a chest x- ray. It was the result of that x- ray that sent my world spinning; it showed Eloise has a dangerously enlarged heart. An ECHO confirmed that she had dilated cardiomyopathy. I felt sick and faint: I’m a Paediatric nurse so I knew how devastating this diagnosis was.
Eventually they managed to get IV access into my very poorly shut down baby and transfer her to PICU. It was very dangerous to sedate her as she was so unstable but eventually they got her onto a ventilator with full cardiac drug support. I remember being taken into the quiet room to hear really poor statistics regarding Eloise’s chances of survival. Her fight to live had begun. Over the next few days she remained extremely unstable, lying cold on a cooling mat she felt awful like meat on a butchers slap which upset me so much. The doctors managed to diagnose viral cardiomyopathy from doing a rectal swab that had been caused by the hand, foot and mouth virus. The only relief that gave me was knowing my other daughter, Leah, would be ok because we weren’t looking at a genetic condition. After two weeks in PICU it was obvious Eloise’s own heart wasn’t going to recover and she needed to be assessed for transplantation.
Eloise was prepared for a transfer to GOSH but on the morning of transfer – 5th June – it turned out there was no longer a bed available for her. My hopes were crushed; we had been given hope and then it was taken away. However, it turned out that the Freeman in Newcastle had a bed for Eloise and we were so happy to have been given a second chance. Eloise was taken by air ambulance to Newcastle and we made our own way there not knowing if my baby was still alive. I couldn’t bring myself to pack any clothes for her and so I just took one baby grow to put her in if she died – I still have it.
Thankfully she did survive and she actually looked better after the flight and had lower ventilator settings etc. The staff at the Freeman looked after us so well and offered such fantastic holistic care. Eloise began her tests to see if she was suitable to be transplanted and we met with transplant coordinators to go through psychological tests etc and to be given the facts regarding after care.
Eloise was suitable but as she had a line infection this had to be treated first and she wasn’t on the active list. Eventually, on the 9th of June, there was a real buzz around the unit with lots of phone calls and people looking at Eloise’s charts. Later that evening we were told they had a match for Eloise despite the fact she had only been put on the active list less than twenty-four hours previously. We sat down to do the consent form and were informed that the transplant would be an ABO mismatch: Eloise is blood group A and the donor was blood group B. Eloise strangely had no antibodies towards group B and so the transplant went ahead and was a success. Eloise became the world’s oldest ABO mismatch at twenty-one months, the third performed by Newcastle and twenty-ninth in the World.
Eloise went from strength to strength and was off the ventilator in forty-eight hours, on the ward for three weeks before being transferred to GOSH for a week. All her care is now under GOSH and Bristol Children’s. She has been very lucky, really well, fit and full of life. In nearly eleven years, she has only been admitted to hospital for a tonsillectomy, head injury and anti viral medication to treat chicken pox. She is now twelve years old and in year seven at secondary school. She loves her new school and is beginning to shine academically. I am so proud of my special girl.
We have also been sending regular updates and photos to our donor family and in 2011 we received our first one in return. We have now had three letters and they watched Eloise on TV during the From The Heart Campaign. Without our donor family I would not be writing this story, or running these groups and pages – life would be so different.
Love to all the donor families that have the strength to donate their loved ones organs to children like my Eloise so life can go on.