Hannah's New Heart

“‘She’s in heart failure. She needs a transplant,’ are words you are never prepared to hear.”

When Hannah (13) felt unwell, she was treated for a strep A infection but continued to feel breathless and lethargic. Suspecting pneumonia, Mum Lorna brought her back to the children’s hospital. But that was not the diagnosis they received.

She says, “We were told she had dilated cardiomyopathy. Her heart could stop at any time and they were putting her on the transplant list. It could take 6-12 months, and she would need to stay in hospital until a new heart was found.

“It was too big. Too sudden. We just kept thinking, ‘No this can’t be happening’. We couldn’t take it in. Hannah was incredible and accepted it quite quickly. She just wanted to be better.

“For three months, she was on bed rest in the ICU. She had to stay on medication, otherwise her heart would fail. She had to keep her heart rate down, so could only go about in a wheelchair, so her muscles wasted and she lost a lot of weight. She was so active before, so it was difficult to watch this happening to her.

We were told her heart could stop at any time and they were putting her on the transplant list. It could take 6-12 months, and she would need to stay in hospital until a new heart was found.

- Lorna, Hannah's mum

“We had two false trips to Newcastle, where they thought they had a heart and then it fell through. The emotional turmoil of waiting was overwhelming. Finally, one night at 5pm, we got the call. By midnight, she was in surgery. And by 11am the next day, she had her new heart.

“I can’t even describe how it feels to sit in a room and wait while your daughter is having major heart surgery. We were just panicking, in disbelief. We couldn’t even talk. What can you say? Eventually they phoned and said she was in recovery. I just broke down.

“Post-surgery, she was kept unconscious and intubated for 10 days. Things were a bit touch and go initially, but after the first day, something just clicked. Her new heart joined in and started working! She had tubes everywhere, but the colour was back in her face. She looked like the old Hannah.

“After a month in Newcastle to recover, she was able to come home to Edinburgh. She has nerve damage in her foot and extreme muscle weakness in her legs so was on Dalhousie ward for rehabilitation. She had to be in a wheelchair initially but is now walking with just one crutch. She is determined to walk unaided again.

“The support we’ve had throughout this has been immeasurable. We were lucky to get a room in Ronald McDonald House so we could stay by Hannah’s side. Kindred was an enormous support, helping with the financial bits you just can’t think about when you think you’re going to lose your child. The nurses and NHS staff were amazing! They became great friends to Hannah and really kept her spirits up.

“The support from ECHC made the world of difference. Youth workers Emma and Anna were brilliant. They visited Hannah nearly every day, taking her mind off everything with activities and playing games. She would also go to the Hub which distracted her from the stress of being in hospital. They even arranged for her to have a haircut, which made her feel a little better.

“She still attends the charity Youth Group on a Monday night. This was great as she enjoyed socialising with young people her own age and talking to the youth workers about her anxieties and feelings. This really helped her emotionally.

“At the end of July, after 182 nights in hospital, Hannah came home! Heart-wise, everything is looking good. The doctors said it will take about a year for her body to full accept her new heart, and she will always have to take rejection meds.

“Last Valentine’s Day, we were desperately waiting for a new heart. In May, we celebrate her heart’s first birthday. The way she has just kept going through everything is astonishing. It’s a long journey, and we’re still only about half way, but we have to remember how far she’s come.”

From the bottom of our hearts, thank you so much for being there for children like Hannah. Your donations provide more than medicine. This Valentine’s Day, spread the love by making a donation to help more seriously ill children in hospital.