During her short but happy life, Elena spent a total of eight months as an in-patient at King’s and staff soon became like a second family to her, her brothers Thomas and William and her parents Mel and Dan.
Elena was born with a rare genetic condition called Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS), which meant that her digestive system didn’t develop properly.
This eventually caused liver failure, and in August 2017 Elena received her first multi-organ transplant at King’s, receiving a new stomach, liver, pancreas, small intestine and colon. Although only partially successful, the transplant enabled her to live a full and active life at home for two years.
Elena received her second multi-organ transplant in August 2019, but rejection set in and her anti-rejection medicine left her vulnerable to infections. Sadly, Elena passed away at King’s in December 2019, aged just three.
Taking inspiration from her positive outlook on life, the Betts family launched the Elena Effect – a joint drive to highlight the importance of organ donation and raise money for King’s High Dependency and Paediatric Intensive Care Units.
“We first came up with the idea when Elena was in the Paediatric Intensive Care Unit,” says Mel.
“We wanted to create something positive from our experience and, at the time, I was hoping beyond hope that we could trek to Snowdon with Elena to raise money for King’s College Hospital Charity.
"We also wanted to get people to talk openly about the difficult subject of organ donation and raise awareness of the lesser-known transplantable organs like the stomach and bowel.
“In a situation where a child could potentially become a donor, it is still up to the parents to decide which organs can be used, but the lesser-known organs are often left unticked on the permission form. I’d like to campaign for the intestinal tract to be automatically taken as a block so that when a liver is donated the bowel is too, just as it is with a lot of adult liver donations. This could make such a difference to many children’s lives.”
Transforming lives
“Thankfully, we live in a world where we don’t lose children very often. It makes it difficult to get a donor, but if people just knew what a difference it can make,” says Mel.
“Without her transplants, Elena would have been very, very poorly and would probably have spent most of her days in hospital, rather than living life to the full. Thanks to organ donation we got to know our little girl. We got to take her on holiday. We got to know her likes and dislikes, her taste in music and her favourite foods. Thanks to organ donation we got to take more photos and videos which now give us so much joy.”
The Betts are also calling for more testing for rare genetic conditions.
“Due to funding issues we offered to pay privately for a test to confirm our belief that Elena had MMIHS, “says Dan.
“King’s also shared this belief, so the diagnosis didn’t change her treatment plan in any way, but it was important for us to know what we were facing as a family because it’s hard to watch what’s going on without knowing exactly why.”
Fabulous fundraising
The Elena Effect has already raised over £27,000 for King’s College Hospital Charity, thanks to the efforts of family members, friends, colleagues, Lincoln residents, Facebook followers, and the Honourable Company of Edinburgh Golfers in Muirfield.
Money has been raised through a wide range of activities including sponsored marathons and a 10k run, a static cycle challenge, a 72-mile solo bike ride, virtual bingo, tabletop sales, collections and special bracelets. Future events include an already sold-out ball, a sponsored school walk and that Betts family trek to Snowdon amongst other things.
“We hope the money will be used to extend and revamp the parents’ facilities on Thomas Cook Children’s Critical Care Centre,” says Dan
“Currently there’s only one small room with kitchen facilities for families. Sometimes people will come in to make themselves a drink or something to eat, not realising that a family is in there, receiving devastating news about their child.
“We want to help create a comfortable private space for families who find themselves in this terrible situation and ensure that families continue to have somewhere to sit, eat and rest just 5-10 minutes away from their child’s bedside. We hope to be able to dedicate this new space to Elena’s memory.”
Incredible care
King’s will always hold a very special place in our hearts, not only for the incredible care that Elena received but for the care that we received as a family,” says Mel.
“Every member of staff was amazing. They became our second family and were there for us as we lived our parallel lives, sharing our time with Elena down in London and with the boys at home in Lincoln.
“They did so many things that meant so much. One nurse came into the ward on her day off to bring me Christmas dinner. She sat with me in the parent’s room because she didn’t want me to be alone on Christmas Day. That was one of the nicest things anyone has ever done for me.
“Another nurse knew how much I loved Paris, so when she went there with friends, she brought back cakes for Dan and me.
"And one of the ladies who cleans the Paediatric Intensive Care Unit was there when I received some devastating news. I remember she just grabbed me in her arms and held me.
“They are all such special people.”