Stevenage parents’ CDH fundraising mission after death of 23-hour-old Elijah
- Credit: Archant
THE parents of a baby who died 23 hours after birth due to a diaphraghm defect are trying to raise awareness of the condition as a search for the cause continues.
Mark Smith and Krystal Blue’s son Elijah died just under a month ago as a result of a congenital diaphragmatic hernia (CDH) – a hole in the diaphragm that allows organs from the abdomen to move into the chest, affecting lung growth.
The couple from Stevenage discovered their unborn son had the condition – which affects 1 in 2,500 babies and has a 50 per cent survival rate – following an ultrasound scan 18 weeks into the pregnancy.
“We had never heard of it so it was hard to believe at first,” said Mark, 23, who regularly visited University College London Hospital (UCLH) with his partner in the lead up to the birth and was given a tour of Great Ormond Street Hospital’s (GOSH) intensive care unit where Elijah was due to be cared for afterwards.
“Krystal went into labour early. Lister Hospital put her on a drip to stop it, gave her steroid jabs to boost Elijah’s lung growth and then transferred us down to UCLH via ambulance. When she was off the drip, the labour started again and he was born a month early at UCLH on May 8.
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“Before he was born we were told it looked quite positive and favourable but not long after being born he was given an MRI scan which found all his abdominal organs were in his chest.
“Sadly he was too small for the treatment at GOSH, and UCLH could offer nothing more than what they were already doing, and could see no signs of him improving.
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“Our parents came down to see him on the day after and we had him christened by the hospital chaplain, before we had to make the awful decision to take him off the equipment that was keeping him alive.
“It’s been devastating and you just don’t expect it to happen to you. It feels unfair and you think ‘why us’?.”
Elijah’s funeral was held at St Hugh and St John Church in Stevenage last Tuesday with a collection for CDH UK, a charity which supports families affected and funds further research into finding the cause and prevention.
Krystal, 21, said: “We are aiming to raise as much as we possibly can for CDH UK as they were a helping hand to ourselves and help many other families who are going through the very same thing we are.
“Sadly our journey has ended, so to speak, but Elijah has left a footprint on all of us. We would like to fundraise in his name, for the people who helped him and us.”
To make a donation to CDH UK visit www.mycharitypage.com/ElijahWilliam