A Colne mum has launched an epetition to raise awareness of a rare condition which tragically caused the death of her six day old baby.
Samantha Murray (23), of Peter Street, and her fiancé James Wellock, lost their son Oliver to Medium-chain acyl-CoA dehydrogenase deficiency (MCADD), a rare condition which affects only one in 8,000 newborns.
Oliver was born an apparent happy and healthy baby on April 18th but died on April 24th this year with the genetic deficiency which causes difficulties breaking down fatty acids for energy.
This can lead to a build up of toxic acids in the body and then a sudden drop in blood sugar levels as the body tries to respond.
A couple of family members have MCADD, but Samantha and James did not know they were both carriers of MCADD until after Oliver died.
With both as carriers, there is a 25% chance of a baby being born with MCADD but the couple’s daughter Faye (2) does not suffer with the deficiency.
Despite the NHS introducing the Newborn Screening Programme in 2009 with the aim of detecting conditions before life threatening symptoms emerge, Samantha would like to see changes made.
Samantha said: “If you have a history of MCADD in your family, the heel prick is done in hospital on the day of birth but if you don’t, a health worker will come out to your house after seven days.
“I’d like to see it done earlier.
“Oliver was just a normal newborn and there were no symptoms apart from what you might expect from a baby. He slept for hours and woke when he wanted a feed but of course it wasn’t enough because of the MCADD.
“I would have definitely done more but the symptoms are just what babies do and you don’t think bad things. It didn’t ring any alarm bells.
“The thing is if you know it’s a case of MCADD, it is really quite a simple thing to deal with.
“The petition has got signatures from friends and family on Facebook who are sharing it. I’m going to set up a Twitter account too.”
As well as launching the petition, Samantha hopes to lobby Pendle MP Andrew Stephenson in an effort to see a change in the procedure.
To sign the epetition, go to http://epetitions.direct.gov.uk/petitions/70684