Boy with half a heart is marking first birthday

Eleven-month-old Jacob Lees was born with hypoplastic left heart syndrome (HLHS), a rare defect that means half of his heart did not form properly.

After being given the devastating news after a 21-week scan, his parents were told to ‘expect the worst’.

He had two open heart surgeries before he was four months old and doctors did not think he would ever be able to live a ‘normal life’.

But the youngster, from Birch Lane in Rugeley, has battled through and will celebrate his birthday on April 17 at Cannock Special Needs Adventure Playground.

Amazing

He will be joined by siblings Charley Elwell, eight, and Amelie Elwell, 10, and friends who have the same condition.

A balloon will be released for babies who have died from the condition, which can cause heart failure.

Jacob’s mother, Melanie Cresswell, aged 33, said: “He is amazing for what he is doing and the condition effects him every day.

“We have come on a long journey and we were told to expect the worst. We were told to expect to come home on a feeding tube and have difficulty putting on weight.

“We have done well to get by without a feeding tube and he has normal milk rather than high calorie to gain weight.

“We were told we would not meet many milestones on target but we have met them all apart from speech and we are not too concerned at the minute.”

HLHS can be fatal if it is not detected early enough and a baby can have heart failure before they are born.

Although Jacob’s condition was picked up while he was in the womb, there is still a risk he could go into heart failure.

Melanie and his father, Daniel Leese, 34, have been told they to need to look out for symptoms, such as Jacob’s skin turning blue, or him being more breathless than usual. They also have to keep him as calm as possible.

Melanie added: “It is mixed emotions coming up to his birthday. We do not know what the future holds for Jacob, which makes life difficult every day knowing he could go into heart failure at any point.

“If he gets too active, we have to force him to sit down and read a book to calm down.

“It took a lot of courage to plan a party. He is very social, outgoing and loves being around people because he has always been surrounded by nurses and doctors.

“I have to thank Little Hearts Matter, they helped us so much when we found out and have been amazing ever since.

“Acorns Children’s Hospice have been fantastic as well.”