Summer fourth on waiting list for a new heart

A little girl who is waiting for her second heart transplant has a condition so rare doctors have only seen it in one other child.

Just a year after having a heart transplant, Summer Carss, who turns three in November, is on the list again.

But doctors are baffled by her condition.

Summer, from Shilbottle, attended a clinic for a routine check-up last month, only for her parents to find out that all three arteries leading to her heart were almost completely blocked.

She is now in the Children’s Heart Unit at Newcastle’s Freeman Hospital waiting for a donor and mum Julie and dad Paul are staying with her.

Julie said: “Her condition is so rare that the doctors here have only seen it in one other child and that was post mortem.

“They don’t know why it happened and they don’t know if it will happen again.

“When they looked at the arteries, they were all nearly completely blocked. If one gets blocked then that would have been it.

“She was so well even the doctors couldn’t believe that she was so ill. They even phoned consultants in Toronto to see if they could find a solution to her problem.

“They normally see it in heart-transplant patients towards the end of the graft, around 10 to 15 years after, but it is very rare.”

Now Summer is on a Berlin heart, an artificial organ outside her body, while they wait for a donor.

Summer waited around eight months for her last transplant and Julie and Paul are hoping that this time the wait is shorter.

“She’s the rcord-holder from the first time around,” Julie said.

“She was on the Berlin heart for 222 days.

“We had a longer-than-average wait last time so we’re hoping it is shorter this time.

“It seems so unfair that she has been through it all before and now she has got to do it all again but she is doing so well.

“We’re just hoping she stays this well until the transplant and then she will bounce back from it quickly. But it’s just a waiting game.

“It would be so much easier if they could say when she is going to get it, but they can’t.”

Summer even helps the nurses take her blood pressure and put on pads to monitor her heart.

Julie added: “She just takes it all in her stride.

“We go outside every day, but we have to take the equipment and a nurse with us.”

One of the nurses added: “She is an amazing little girl, but that’s because she has an amazing mum and dad.”

Summer is fourth in the country on the children’s list for a donor heart.

Three other children at Great Ormond Street are above her.

But her condition means that a heart which is not a perfect match could still be considered.

Julie added: “The doctors are prepared to go with it if it is the right blood group and the right size, but we have to wait and see.”

Summer celebrates her third birthday on November 4 and it is hoped that she will get a heart soon to try to make it home for her birthday.