Beautiful four year old Evie needs a heart transplant urgently. Evie’s mummy Chloe asks for everyone to share her little girl’s story and to talk about organ donation within your families.
“My daughter Evie is 4 years old and the most beautiful cheeky girl I’ve ever known.
She was diagnosed with a condition called Dilated Cardiomyopathy in October 2019. She responded excellently with medication and was discharged 12 days later.
She had one setback Christmas Day 2019 when she deteriorated from a chest infection but responded brilliant with IV milrinone and got weaned very quickly. Her heart function remained poor throughout though but her main way of showing how well she is was her amazing personality and being clinically well.
Due to Covid, we spent a good 2 years so stable because we could spend time at home as a family with Mum, Dad and her big brother Theo (5). We had a lot of worries because doctors always told us that her function is very poor so we always need to be ready to get her checked if anything was wrong.
From September 2022, things started progressing with her condition such as her BNP blood levels were rising. They sat along the 1000s at her most well. But from September they rocketed to 19,000. There was no clear reason as again Evie was so happy in herself and these levels did come down over the next couple of months.
However January 2023, Evie had RSV very mildly just like an average cold but her BNP levels rocketed to 27,000 the highest they’d ever been. So it was decided that she would need to be a planned admission and put on IV Milrinone to try and drive these numbers down. Again Evie very happy and cheeky.
We were admitted 15th February 2023 and for a good two weeks things were going excellently with her numbers going down (27,000-11,000 in 2 weeks).
Then on 6th March 2023, these numbers rocketed back up to 20,000 even though she was on the milrinone. Evie underwent a transplant assessment during this stay and was moved from routine list to urgent list as a result.
It was likely that things were progressing but once again Evie was so happy in herself that it completely confused us that she could look so well but inside she was poorly. We just didn’t get it.
On Thursday 9th March, Evie suddenly seemed rather lethargic and tired in herself. She ate one slice of toast all day and spent the day sleeping a lot which wasn’t like her. She also spiked fevers throughout the day so we assumed it was infection related. Her Hickman line site actually swabbed positive for some bacteria so they did start antibiotics.
On Friday 10th March, Evie was worse. She ate nothing, was barely awake, still spiking fevers and because her heart rate was quite high and she was lethargic they transferred her up to PICU as a proactive measure to keep an eye on things. It was starting to become clear to me that a skin infection wouldn’t cause all these symptoms.
On Saturday 11th March things deteriorated so quickly that the PICU team said that they really think they needed to operate today and put her on an LVAD (Left Ventricular Assist Device) and it could be right side too as her right side is mildly impaired but they had to wait and see.
This was mentioned in a couple of conversations and before all this I was terrified of being on it but at this point I was desperate for them to do the surgery as I could feel in my gut something bad was imminent.
Evie went to theatre 2:30pm and was in there for nearly 8 hours. She suffered a cardiac arrest when she was getting ventilated and was gone for 2 minutes. The amazing team got her back with just CPR and restored her own rhythm without any interventions. Apart from this, she got the LVAD they were happy with her right side. She is currently ventilated and sedated and awaiting her chest to be closed.
Evie’s heart was so sick that they made a National call out to see if there was a heart donor available for Evie which unfortunately there wasn’t. We were told after that they think we would of been in a hell of a lot of trouble if they waited an extra day to do the surgery.
The Berlin Heart is a method to bridge her to a transplant. She will not leave hospital until someone gives her this gift.
‘Evie’s life was in serious danger just over a month ago when her Berlin heart stopped working due to an obstruction in her pipes likely to be a clot. She was intubated due to the danger that the machine was no longer working and taken for a CT scan immediately to find out where the obstruction was and then the team fitted a stent. They gave us a bleak picture especially as the obstruction was so large that it stopped her flows to her heart so that a stent could cause the clot to fly into her brain. There was no guarantees that this would work either but thankfully Evie came through and flows were restored and there was no sign of a stroke.
The speedy response was just amazing and we are still in shock from it all but I will forever be grateful for the whole team at the Freeman Hospital’.
48% of families donate their child’s organs if they pass. There is a 9-12 month wait on average to receiving a new heart.
Please talk to each other about this if you have kids, because now we have to pray that a family will give Evie’s Heart Journeythis precious gift in the future.
