A brave little girl who had her second heart transplant at just three years old is now home and full of smiles after a rocky road to recovery.
Summer Carss was born with a condition affecting the left side of her heart and after what was thought to be a chest infection at Christmas 2011, she was put on the heart-transplant list.
Parents Julie and Paul, of Farne Road, Shilbottle, waited an agonising nine months for Summer’s operation at the Children’s Heart Unit at the Freeman Hospital in Newcastle. During that time she was put on a Berlin heart, an artificial organ outside her body, to keep her alive.
After the operation in September 2012, she seemed to recover well and doctors were pleased with her progress.
But a routine appointment, almost a year to the day after her transplant, found that the youngster was suffering from coronary artery disease and she was put back on the Berlin heart.
And despite two strokes, cardiac arrests, the heart being rejected and having to learn how to walk and talk again, Summer is now getting back to full health and improving every day after her second transplant.
After just a few weeks on the ward, following a stay in intensive care, Summer was able to go home, although she had to be in isolation to prevent infections.
But now she is able to play with her family and friends, go out and about and is hoping to start nursery later this year.
Julie, 30, said: “It has been horrendous, but she is doing so well.
“She has defied everything. Everything that has been thrown at her she has tackled. She just battles through, she’s amazing.
“She’s a feisty little one and I think that is what has got her through it all.
“She knows her own mind and she will do what she wants.
“This time feels different, it seems like she has this healthy glow which she didn’t have before.
“Every time we went to the clinic last time they said her heart function was good, but this time around they say it is fantastic and we never heard that before.
“The heart was a perfect match for her, which the first one wasn’t.
“She just seems so much healthier now.
“They still don’t know why it happened to her. The surgeons at the Freeman said they have never had to re-transplant a three-year-old before.
“When we first found out that she needed another heart, we just couldn’t believe that she would have to go through it all again.
“This time has been harder and we nearly lost her so many times, but we have just had to get on with things and stay strong for her.
“Since coming home she has improved in leaps and bounds. When we first came back she couldn’t sit up, let alone walk, and now she is walking and talking and is almost at the same level as her peers.”
At first, despite being a perfect match for Summer, the heart wasn’t working.
Surgeons were convinced that it would start and Summer was put on life support. As she improved, they wanted to wean her off the machine and the heart showed that it was functioning well with Summer getting better. But when they took her off, she went into septic shock.
“They found out she had an infection that was just starting to show on the outside, but was everywhere on the inside,” Julie added.
“We are lucky she got the heart when she did. Her tissues were really damaged and we don’t know how much longer she would have lasted on the Berlin heart.”
At one point after the transplant, surgeons closed a theatre at the Freeman for 24 hours to make sure they could react quickly if Summer needed help.
But the concerns didn’t stop there. When they started to wake Summer up in intensive care, doctors found that she was paralysed on her right side.
A CT scan found that she had suffered two strokes.
And the last hurdle in her rocky road to recovery saw Summer’s body rejecting the heart. But a course of steroids put it back to normal after 12 hours.
Julie has thanked the family who donated the organ to Summer, as well as praising the Freeman for the ‘outstanding’ work that they do.
She said: “The family who decided to donate their child’s heart are just amazing and we can never thank them enough for what they have done.
“To think of helping someone else when their whole world was crashing down is just brilliant and I don’t know how they could do it.
“We have been lucky that two people have donated to help Summer and I can’t begin to explain how important it is.
“Summer was the last heart transplant that they have done in the Children’s Heart Unit. At the moment there are around eight children on the waiting list, and they are getting sicker.
“The Freeman is just the best.
“Summer was a complex case, but they were prepared to do everything and anything to help her. They never give up on a child, they never get to the point where they can’t do anymore.
“If something doesn’t work, they find another way.
“I don’t think anybody realises just how fantastic they are unless you have been there and seen how it works.
“They tell you that their end goal is to get the child home, it doesn’t matter what is in between, ultimately they want to send a child home.”
Summer is now on different medication and is trying out unlicensed drugs to help her recovery.
She visits a clinic at the Freeman fortnightly and is receiving three-weekly physiotherapy sessions as well. She is also having extra feeds through a tube to boost her weight, although it is hoped that she will have the tube removed next week.
And the family is also looking forward to having some holidays this year.
“Summer has had to go through so much that we just want to give her the best time we can.” Julie said.