A baby with an extremely rare heart condition is going home after more than nine months of intensive care by leading experts at Queen’s Medical Centre (QMC) in Nottingham.
Vanellope Hope Watkins was born in November 2016 with her heart on the outside of her body and is believed to be the first baby in the UK to survive the condition, which is called ectopia cordis.
Babies born with this condition usually have a less than 10 per cent chance of survival but after defying the odds, Vanellope is now well enough to continue her care and treatment at home.
Dr Patrick Davies, Consultant Paediatrician on Nottingham Children’s Hospitals’ Paediatric Critical Care Unit (PCCU), part of Nottingham University Hospitals NHS Trust (NUH), led Vanellope’s care. He said: “It’s fantastic news for Vanellope and her family that she is finally ready to go home. Over the last nine months there have been ups and downs and couple of false starts but everything is now in place.
“All of our patients on our Paediatric Critical Care Unit have complicated conditions and require specialist types of care and Vanellope’s condition is extremely rare. It has been a learning experience for us all but she has grown and grown as a person, and it is fantastic to see her grow from being a baby to now a little girl.”
Born at Glenfield Hospital in Leicester, Vanellope was transferred to PCCU at QMC in May last year to be closer to her home in Nottingham and has received round-the-clock care from a team of leading experts.
Dr Davies added: “A huge team have been involved in looking after her. The orthotics department had to create a specialist shield for her chest to protect her heart and there are physiotherapists, play specialists, specialist nurses and administration team – so many have been involved.
“The next phase of Vanellope’s treatment includes creating a sternum for her. There are a few teams working on possible solutions for her and as she grows and develops this will be the next step.”
As part of her ongoing care, Vanellope will be on ventilation for 18 hours every day, including overnight, and she requires full time monitoring to ensure she does not roll over on her front.
Adele Frost, Long-Term Ventilation Nurse at NUH’s Children’s Hospital, said: “It’s a really positive day. In Nottingham we have been with Vanellope for part of that journey and we will continue to support the family moving forward. Whenever a child goes home after a long stay in hospital it is a huge celebration and achievement.
“Vanellope has been visiting home over the last few months for short stays at home and today is a real landmark occasion that she is going home for good.”