Eloise was born on the 7th September 2000, at 32 weeks weighing a healthy 4lb 15oz. She was fit, well and heart healthy. She had an echo during my pregnancy and one at birth because I have a mild CHD. These tests showed she 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, she wasn’t really ill. On the 23rd of May she woke up unwell, laboured breathing, blue tinge to her lips so I rang the GP for advise. He advised taking her to Bristol Children’s Hospital to be assessed. Off I went thinking worse case scenario admitted for intravenous antibiotics to treat a chest infection. On arrival Eloise was assessed by a nurse and then a Dr her observations were in normal limits 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 pediatric nurse so I knew how devastating this diagnosis was.
Eventually they managed to get i.v. 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 that upset me so much. The Drs managed to diagnose viral cardiomyopathy caused by the Hand, Foot and Mouth virus from doing a rectal swab. The only relief that gave was knowing my other daughter Leah would be ok, 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, she needed to be assessed for transplantation.
Eloise was prepared for a transfer to GOSH but on the morning of transfer 5th June, there was no longer a bed available for her, my hopes were crushed. We had been given hope and then it was taken away. Then The Freeman in Newcastle had a bed for Eloise, so happy to have a second chance. Eloise was taken by Air Ambulance to the Freeman. 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, I just took one baby grow to put her in if she died ( I still have it)
Survive she did, in fact she looked better after the flight , lower ventilator settings etc. The staff looked after us so well, 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 that had to be treated first she wasn’t on the active list. On the 9th of June there was a real buzz around the unit lots of phone calls, looking at Eloise’s charts etc , later that evening we were told they had a match for Eloise she’d been put on the active list less than 24hrs previously . We sat down to do the consent form, we were told the transplant would be an ABO mismatch Eloise is blood group A and the donor blood group B. Eloise strangely had no antibodies towards group B. The transplant went ahead and was a success. Eloise became the Worlds Oldest ABO mismatch at 21 months, the third performed by Newcastle, 29th in the World.
Eloise went from strength to strength off the ventilator in 48 hours then 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.
Eloise has been lucky, really well, fit and full of life. We had a hospital free 11 years. So it came as a huge shock in June 2013 when Eloise went to GOSH for her Annual Review to find out that she was in rejection. This was treated but rejection episode number two happened in September of that year. She had a bumpy few months with fluid around the heart etc but thankfully 2014 has been much a better and stable year. Eloise continues to do well at school, she’s a very happy level headed child who loves and lives life.
This year I also met the mother of Eloise’s heart donor a truly amazing lady who means the World to me and I feel privileged to know her and have her continued support.