One family found itself in the agonizing position of knowing that another child will have to die before the life of their own “little warrior” can be saved.
Motherwell’s couple, Ashley, and Gordon Gunn’s son Zac, 3, struggle with pulmonary hypertension (PH) – a rare, life-limiting disease that affects the heart and lungs.
The toddler lives on borrowed time and is in desperate need of a new set of lungs, but because he is so small his donor must be under the age of nine. As the new organ donation exclusion system does not apply to children under the age of 16, Zac’s life now depends on a family making a difficult decision while their own little one is in the process of dying. die.
Ashley, 34, hopes parents who find themselves in this terrible situation will realize that while their child’s life cannot be saved, their organs could save the lives of others.
Mom of two told the Daily Record: “Zac is a very bad little boy, even if looking at him you will never know. He desperately needs a new set of lungs and lives on borrowed time.
“His father and I were delighted when he was put on the transplant list in March, especially since the new exclusion law had come into force, which we believe would increase the chances of finding a donor. .
“But our joy was short-lived when the doctors told us because he is so small that Zac can only accept the lungs of a baby or child up to the age of nine. , which means that a child will have to die for their life to be saved.
“Our hearts sank even deeper when we discovered that the exclusion law did not apply to people under the age of 16, which means parents will have to give their consent when their child is dying. It is a horrible situation for any family to find themselves, especially if they did not see the question coming.
Ashley, who is also a mother to four-year-old Jacob, added: “As a mother of two little boys, I appreciate how painful it would be to be asked about organ donation after simply learning that my child could not be saved.
“But if I was ready to answer the question and knew that part of my dying child could live with someone else, giving them a chance at life, I would be willing to give my consent.
“There are not enough adult organs for everyone and the number of children who find themselves dependent on survival is even smaller, so it is vital for us to get the message out not only for Zac but for all the other little children who are waiting. transplant.
“They should have the same rights as adults when it comes to organ donation, perhaps especially since they have their whole life ahead of them.”
“I hope that sharing Zac’s story will increase awareness of organ donation in children and encourage families to have the difficult ‘what if’ conversation so that they are prepared if the worst should happen. .
“It’s natural for parents to want to hold on to their dying child, but we also hold on to our baby boy. Zac is a little fighter and we will fight for him with every breath of our body.
The toddler was diagnosed with PH in August 2019 after doctors ruled his blood vessels were too small for his heart to pump blood through his body.
The youngster had undergone five weeks of tests, first at Wishaw General Hospital and then at the Royal Hospital for Children in Glasgow before his case was transferred to Great Ormond Street in London.
His mother and father were told they would be lucky if Zac survived until Christmas, but 18 months later and their “little warrior” is there, astounding all of his doctors and consultants.
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Ashley said: “Zac was a very happy baby, but when he was a year old I knew something just was wrong. He had a terrible cough and would be exhausted after a short period of running. I expressed my concern to GPs and doctors, but was told he was fine.
“As a mom, I had a feeling that something was really wrong and in August 2019 I took him to the GP and asked to be referred to the hospital, where they took us. said it was just a serious lung infection.
“After two weeks of antibiotics and oxygen I still wasn’t convinced and begged them to do more testing and on August 23 our lives were turned beyond words when he was diagnosed with pulmonary hypertension and was given only five months to live. Our world has collapsed around us.
Ashley, who with her husband Gordon, 35, has raised over £ 10,000 for PH research, added: “Zac was rushed to Great Ormond Street where he was placed in a large outhouse.
“The doctors were very good at explaining everything and five weeks and three hospitals later we were allowed to go home with two types of oral medication.
“In December 2019, Zac was fitted with a Hickman line through which intravenous medicine is pumped 24 hours a day, 7 days a week. The drug epoprostenol increases blood flow in the narrowed vessels in his lungs. He has to carry the pump with him all the time in a small backpack.
“Although the drug is slowing the progression of his condition, the 52 physicians and PH specialists who gathered to discuss Zac’s case all agree that a transplant is his only lifesaving option.”
Ashley added, “Zac seems to have a special effect on everyone he meets and he deserves to live on. He is our little warrior and we want to give him his best life, which is why it is so important for parents to discuss their children’s organ donation if the worst were to happen. It’s Zac’s only hope.
“If her dad or I could give her our lungs, we would do it in the blink of an eye, but we can’t, so we rely on the kindness of strangers.” Our little boy has so much to go through.