World heart day: Young woman given her ‘power back’ after heart transplant

Cardiomyopathy is a term used to describe disease of the heart muscle. There are three types of cardiomyopathy which affect children and young people: hypertrophic cardiomyopathy (where the heart muscle thickens); restricted cardiomyopathy (where the heart muscle stiffens) and dilated cardiomyopathy, which causes enlargement of the heart's pumping chambers and results in the muscle walls to stretch and become thin. Around 1 in 250 in the UK population have the condition. 

The team at Royal Brompton Hospital decided that Sofiyat would have a pacemaker fitted to help her heart. 

However, once the pacemaker was fitted, Sofiyat’s condition deteriorated and she was placed on to extracorporeal membrane oxygenation (ECMO), which is a machine used to deliver oxygen into a child’s blood, so that blood can continue to pump around the body.

With her heart weak due to the stretching of the heart wall, Sofiyat repeatedly found herself on ECMO, then the ICU followed by then recovery.

However, this was not enough and with a weak heart, Sofiyat condition worsened further. She was transferred to Flamingo ward, the cardiac intensive care unit at GOSH. Here, her family had the difficult conversation with consultants about Sofiyat being placed on the transplant list.

The average wait time for a child or young person on the heart transplant list is two years which meant.Sofiyat’s family had a tough wait for news of a heart being available. 

Sofiyat said: “My mum would sit in Russell Square Park next to the hospital, she said she would feel close to me there. She prayed there and hoped for a heart.”

Sofiyat’s dad would have to walk from his workplace on Old Street, London to GOSH each day to see her. 

In early 2018, Sofiyat’s family received the news they had been waiting for: a heart was available.

Sofiyat was taken into surgery to receive her new heart, which went on to change her life.

With Sofiyat in and out of the intensive care unit at this time, she wasn’t aware until after the surgery that she had had the transplant. From there it was about recovery and understanding the process she had gone through with the help of her parents and siblings. 

Talking about life now, Sofiyat said: “It makes me emotional speaking about what happened. I’m so thankful for the nurses and consultants who helped me. 

“I’ve got my power back after this; I have a second chance at life and it’s important that I make the most of it.”

Since her transplant, Sofiyat has been able to travel the world and visit countries she never thought she would. She has also finished her Architecture degree at the University of Greenwich and she will graudate this coming October.

Sofiyat’s transplant inspired her whole family to sign up to the organ donation register after they saw first hand the importance of being registered as a donor. 

Speaking on the importance of talking to families about organ donation, Deborah Lovell, GOSH Specialist Organ Donation Nurse (SNOD), said: “We try to ensure that organ and tissue donation is considered as a standard part of end-of-life care. By making sure the family are well supported and informed and are given the time they need to come to terms with the tragic loss of a loved one.

“Take time to talk to your families and support system and make your decision with all the information. Giving life to another person is a lasting legacy.”

To find out more, and confirm your support for organ donation, visit: www.organdonation.nhs.uk, call 0300 123 23 23 or use the NHS app.