020 7650 1200

Parents keen to raise awareness of rare genetic condition following death of baby boy

The parents of a baby boy who died at five days old hope to raise awareness of the rare genetic condition that he was suffering from

Posted on 18 January 2017

An inquest into the death of a Leo James Lang ruled on 12 January 2017 that he died from a naturally occurring disease.
Leo died on 18th February 2016 at Alder Hey Children’s Hospital in Liverpool. He was suffering from a rare genetic condition - medium-chain acyl-CoA dehydrogenase deficiency (MCADD).
MCADD is a rare genetic condition where a person has problems breaking down fat to use as an energy source. MCADD is a lifelong condition that is present from birth. It is estimated to affect up to 1 in every 8,000 babies born in the UK and is usually picked up using the new-born blood spot test. This test is usually performed at five to eight days old[1].
Leo’s parents, Emma and Martin Lang, had concerns about Leo from birth and the coroner opened an inquest into their son’s death. They were represented at the inquest by law firm Leigh Day.
Leo was born on 13th February 2016 at Liverpool Women’s Hospital. Following his birth his parents noticed that he was sleeping a lot, felt cold and was not very interested in his feeds. His mother was also concerned that he was off colour. They raised their concerns with various medical professionals but the rare condition was not detected.
The coroner noted in the inquest that the care provided by healthcare professionals was reasonable and that even if the test to detect MCADD had been performed earlier, the condition would not have been diagnosed until after baby Leo sadly passed away.
According to the NHS Choices website, if someone with MCADD becomes unwell and is unable to eat or tolerate food, they may experience the following symptoms:
  • appearing unusually tired and sluggish
  • being sick
  • excessive sweating
  • rapid breathing
  • seizures (fits)
Leo’s parents said following the inquest: “Nothing can bring back our beautiful baby boy but we hope that we can at least try and raise awareness of MCADD.
“We are grateful that that an inquest has taken place as it has answered some of our questions about what happened to Leo.
“We are really keen to raise awareness of this rare genetic condition so that some small positive can come from Leo’s death.
“We would urge all new parents to raise the possibility of MCADD with their healthcare professionals if they have concerns about their newborn baby.”
Jessica Holt, solicitor from law firm Leigh Day who represented Leo’s family, said: “We are grateful for the thorough investigation carried out by the coroner.
“We are also pleased that the Liverpool Women’s Hospital has decided to carry out an internal review into Leo’s death to determine whether lessons can be learned and that the family will be given the opportunity to be involved in this review.
“It has always been the family’s intention to raise awareness of MCADD and we hope that the reporting of the inquest will highlight this rare genetic condition.”
[1] Source: NHS Choices - http://www.nhs.uk/conditions/MCADD/Pages/Introduction.aspx