Baby Isaac never got to live the full and happy life his family dreamt of. But, thanks to the care and support of Bluebell Wood, they made sure every single second of his short life was filled with love. Mum Emma shares the heartbreaking journey that brought them to Bluebell Wood:

“We had all the normal scans early in the pregnancy and as far as we were concerned everything was fine,” said Emma.

“Well, I say fine – they did tell us Isaac would be a girl at 16 weeks so we were in for a shock later on!” 

As the family excitedly prepared for baby’s arrival, their bliss was shattered at a repeat of their 20 week scan – the first that dad Ed was able to attend due to Covid restrictions.

“We found out Isaac had a blip on his heart and we were totally shellshocked. We just thought everything would be okay. We expected happily ever after.”

A series of tests at a specialist department of Leeds Children’s Hospital revealed the severity of their baby boy’s condition, and the impossible choices they were to face.

“They told us he had a condition called Hypoplastic Left Heart Syndrome (HLHS) and that there’s no cure for it. It basically means that the left side of his heart wouldn’t grow, develop correctly and do what it’s supposed to do.

“That was a terrible blow there and then. Then we were told that he wouldn’t live a long life. We were just heartbroken.”

Emma and Ed were given three choices, to terminate the pregnancy, continue under ‘comfort care’ or opt for their baby boy to undergo a series of open-heart surgeries.

“We couldn’t believe it. All three options meant he’d die before us. I really don’t know how we got our head around it. We spoke to people who’d done all three options and read everything we could about it.

“In the end the desire to meet Isaac won through, and we decided to go for comfort care. That way we could let him pass away on his own terms.

“I have the deepest respect for whatever people choose in these circumstances – they’re all impossible choices.”

There was one more shock to come for the family when their 37-week scan revealed Isaac was, in fact, a boy! News that gave the whole family some light relief amid the darkness.

Isaac arrived on December 6th and after undergoing tests to confirm his condition, the family went home with Bluebell Wood’s Community Team on hand to offer care and support.

“We just wanted to enjoy every second we had with him and get to know him as best we could. He was always held and cuddled, always surrounded by love.”

As Isaac’s condition deteriorated, and the family struggled with exhaustion, they decided to spend their last moments at Bluebell Wood.

“I just didn’t want to be at home anymore. I couldn’t sleep as I didn’t want him to pass away alone and I was just exhausted.

“When we got to Bluebell Wood the staff were all amazing and made our time at the hospice as comfortable as possible. We never wanted him to feel pain and in the four days we had together he had a lifetime of love.

“We did memory making, made feet and hand prints and created memories that we’ll have for the rest of our lives. After he died the staff even sorted everything with the funeral home and looked after us until it was time to go.

“We honestly couldn’t be more grateful to Bluebell Wood for giving us that time and support at the end.”

Help families like Isaac's make every moment count