Beatrix was only 15 months old when she was admitted into hospital with heart failure in May 2022. She now spends her time as a patient in Freeman Hospital on their specific cardiac unit being kept alive by a Berlin Heart* until a suitable donor can be found.
“Bea’s mum, Cheryl, and older sister Eliza caught Covid just before she was admitted. One of their symptoms was them being off their food so when Bea also stopped eating, we just assumed it was Covid. It was only when she also stopped drinking that we called 111 and from there everything happened really quickly.” Bea’s dad Terry recalls the moment their life took a tragic turn.
A hospital social worker at Freeman Hospital referred Bea’s family to Rainbow Trust and Family Support Worker, Monica, started working with the family in Spring 2022.
“Monica’s support has been invaluable. She has been spot on with all of us in different ways. I’ll be honest, I had not heard of Rainbow Trust but that referral has given us something so important.”
Oldest sister Eliza was only 8 when the family lost their youngest daughter, Isabel, who tragically passed away in 2018 from an unrelated heart condition and was just 11 when Bea was first diagnosed. Keeping life as normal as possible for Eliza is so important to Cheryl and Terry, and this is where Monica comes in.
“Eliza has been part of Bea’s journey every step of the way and is old enough to know and understand the enormity of what is going on. Monica takes her out, spends quality time with her, takes her to school and has also arranged socials with a child going through something similar. Right now, Monica is supporting us by picking Eliza up from school and driving her over to the hospital.”
Monica collects Eliza from school, then together they do an hour-long drive to Freeman Hospital where Monica stays with Bea until she goes to bed, and Cheryl and Terry can take Eliza home and spend some quality time with her.
“Monica knows we worry the second we leave Bea, so she keeps us up to date with everything that is going on and sends photo updates all the time. It puts our mind at ease and Bea loves spending time with Monica, her face brightens when she walks into her room.”
“Time is a precious thing when you do not know what is around the corner and Monica’s support makes that easier for us.”
Bea has a long journey ahead of her. Waiting for a suitable donor heart is a long and gruelling process. But with the support from Rainbow Trust and Freeman Hospital, Bea is given the chance to fight, and her family are given the chance to make memories that they will cherish forever.
If you asked someone if they would accept a donated organ, most likely the answer will always be yes - without hesitation.
However, if you asked if they would provide the same gift to someone else, this reply can sometimes be met with uncertainty. The hesitation grows when it comes to considering your child being the donor of a lifesaving organ.
“When we were asked about donating Isabel's organs, initially I did not want to agree, we eventually did agree to donate Isabel’s heart for research and now I have seen how life changing this can be for families I would agree again without hesitation. It could help save a life.”
You can find out more about organ donation here https://www.organdonation.nhs....;
* The Berlin Heart is used to take over the function of a child’s own heart when it becomes too weak to pump sufficient amounts of blood to the lungs and/or around their body. The Berlin Heart pumps blood around the body in order to keep the brain and other organs healthy, allowing the child to grow and get stronger. It will be required until the child is transplanted, or for a small number of children, until their own heart recovers. (https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/berlin-heart-mechanical-heart-assist/)