3-year-old Nicolas needs a new heart - long wait for donation

He was a perfectly healthy little boy when he and his twin brother were born. But in August last year he suddenly became ill. It started with stomach pain, and then everything became much worse.

- He was admitted to the intensive care unit and it turned out that he had suffered a heart failure due to a virus, says Nicolas's father Wojtek Malinowski.

A mechanical heart pump that manages his blood circulation has saved his life. But the machine can also be behind a difficult complication; the disease HLH, which causes Nicolas's immune system to attack his own bone marrow.

"We believe that the mechanical heart pump is part of triggering the immune system," says Nicolas physician, pediatric cardiologist Karin Tran Lundmark.

Nicolas HLH is treated with cell toxins and large amounts of cortisone, a long-term risky treatment.

- If we continue to treat his HLH, we can even give him cancer of the treatment. So that's why we really hope he can have a new heart soon, says Karin Tran Lundmark.

For over 300 days Nicolas has been admitted to the children's clinic at SUS in Lund. Here he is waiting for a new heart and the whole family's life revolves around Nicolas and his heart pump. The pump is connected to an over 100 kilo heavy machine which must always be close to an electrical outlet as the battery only lasts for half an hour.

- We do not live a normal life, we are always in a hospital environment. The heart pump must be checked every four hours, says Paola Palacios, Nicolas's mother.

There are few children's hearts to donate. Both because many children are saved for life and because it is a difficult question for the healthcare staff to ask parents who have lost their child, something that Paola Palacios has a great understanding of.

- Yes, I absolutely have. I hope that the parent who gets the question to donate their child's body, will come to think of Nicolas and then say yes, to maybe save another child, says Paola Palacios.