Blunders meant IVF baby was born with cystic fibrosis

A BABY was born with an incurable condition after blunders during IVF treatment meant that its parents were not revealed as carriers of the genetic condition.

The child inherited cystic fibrosis, which kills half of sufferers before the age of 40, from both the mother and the father.

This could have been prevented, if a private IVF clinic and an NHS hospital had acted on the father’s positive test results for the faulty gene which causes the condition.

The blunder, revealed yesterday, is the first grade A incident – meaning severe harm has been caused – for two years in the fertility industry. Nuffield Health Woking Hospital in Surrey, the private hospital, is being sued by the parents of the child, who has not been named but was born last year.

The Human Fertilisation and Embryology Authority (HFEA), which regulates IVF, says in its annual report: ‘The grade A incident in 2016 involved the birth of a child with cystic fibrosis after the parents had been mistakenly identified as not being carriers.’

Children with cystic fibrosis struggle with breathing and digestion because mucus clogs their lungs. Many die young when their damaged lungs stop working.

Couples at risk of passing on the condition are often saved by IVF however, as a low sperm count is a warning sign in men.

In this case, the father was sent to Frimley Health NHS Foundation Trust, Surrey, for genetic testing because of his low sperm count. But his positive result for cystic fibrosis was wrongly transcribed as negative in a letter.

The errors continued at the Nuffield hospital. There is no evidence the couple’s consultant ever saw the test results. They were attached behind the letter with the incorrect description and wrongly filed within the father’s medical records.

Had the cystic fibrosis gene been picked up, the couple – who also have a child born in 2014 – could have been offered pre-implantation genetic diagnosis, which can select embryos without faulty genes, so that a baby is born healthy. But the parents found out their baby had cystic fibrosis only after it was born.

The grade A incident is one of eight since 2010, including a baby born with sickle cell anaemia.

The total number of incidents has risen from 497 in 2015 to 540 last year, according to the HFEA’s State of the Fertility Sector report. There were 176 grade B incidents, such as lost embryos, 325 grade C incidents, such as an egg rendered unusable, and 38 near misses.

Aileen Feeney, chief executive of patient charity Fertility Network UK, said: ‘It is of grave concern to see that the number of adverse incidents at fertility clinics is con- tinuing to rise - up 8.5 per cent in the last year. Patient safety has to be a clinic’s number one priority.’

HFEA chairman Sally Cheshire said: ‘While the number of incidents and non-compliances must be placed in the context of the many thousands of treatments being performed in the UK each year, all incidents can be very upsetting for patients and must be avoided wherever possible.’

Nuffield Health said: ‘We deeply regret this sad incident. We have offered our most sincere apologies and are providing ongoing support to the couple and their child. We have reviewed our processes and have taken steps to ensure this should never happen again.’

Frimley Health NHS Foundation Trust said it had worked with the family, adding: ‘As a result of the investigation, we implemented a number of actions.’

‘Rise in incidents is of grave concern’