Parents had no idea baby boy would only live weeks because scan missed rare disorder


A dad said losing his baby son at just 27 days old was the “hardest time of his life”.

Scott and Ella Bensley lost their little boy, Joey, after he put on a brave fight against Alveolar Capillary Dysplasia, a rare congenital diffuse lung disease, reports Grimsby Live.

The condition causes babies to have severe, life-threatening breathing problems and high blood pressure in the blood vessels of the lungs, according to the National Organisation for Rare Disorders.

Scott said: “We found out after he was born, it is something that could not be picked up before birth on scan.

“It was after 10 hours after he was born he started struggling to breath and needed help via a ventilator before we were transferred to Sheffield.”

Shortly after his birth in Grimsby’s Diana, Princess of Wales Hospital in 2016, Joey was transferred between Sheffield Training Hospital and Leicester’s Glenfield Hospital to receive specialist care.

The Bensley family came into contact with the Heart Link Children’s Charity during their hospital visits – and say they helped them through their hardest time.

Set up in 1981, the Heart Link Children’s Charity provides a support group for parents and families who have had a child suffering from a heart defect.

Scott added: “During our stay in Leicester and Sheffield hospital, The Heart Link charity helped us massively.

“They provided accommodation for us close enough to be with Joey while he was receiving ECMO treatment, within a two minute walk of the hospital.

“They provided us with a living grant to pay our bills back at home while we stayed by Joey’s bedside and still provide us with enough to buy any necessities we needed at that time.”

To thank them for their support, Scott has committed himself to a skydive experience in March next year – and hopes to raise at least £1,000 for the charity in the process.

He added: “I have decided to do something I’d never forget for my 30th birthday this coming March 2021, so I have been signed up for a Sky dive experience and all the money donated will go to The Heart Link charity.

“This charity really did go above and beyond for us even when we was transferred out of Leicester’s care back to Sheffield Jessops they still stayed in contact asking for updates on Joey’s health, checking how we was coping and if there is any additional support we needed.

“Unfortunately there are families that go through similar to us every day all over the country that need their support just as we did.

“I would love to be able to give this wonderful charity something back for their continuous support throughout the hardest time of my life.”

Since 2016, Scott and Ella have welcomed their two other children, Samuel and Maddison, into the world.