A fertility clinic’s failure to ensure proper screening has resulted for an IVF baby to be born with cystic fibrosis—an inherited disorder in which the lungs, digestive system, and other organs are severely affected.

This is the most serious of 540 other blunders made by IVF clinics in the UK this year.

What caused IVF baby to be born with cystic fibrosis?

Normally before an IVF cycle the parents are screened for genetic problems to avoid getting them passed to the baby.

In this case, Frimley Health NHS foundation trust screened the parents but missed identifying them as carriers of the faulty cystic fibrosis gene.

Cystic fibrosis is a serious health condition which can be inherited when both parents are carriers of the faulty gene. It affects the mucus and digestive juices producing cells and causes the fluids to become thick and sticky, which clogs the lungs and digestive system. Patients of cystic fibrosis also have a shortened lifespan.

If the parents have a history of hereditary problems, their IVF clinic will normally screen the embryos with PGS technology and select only the healthy ones to be transferred to the uterus. 

IVF clinic mistake causes cystic fibrosis in baby

The incident was published in state of the fertility sector report, which primarily talks about how the UK fertility sector is doing. According to the report, a total of 76,469 cycles of IVF were carried out in 119 licensed fertility clinics across the UK in 2016.

This was the only incident that was labeled ‘Grade A’ in the report. The incidents are classified as:

Grade A – those which cause severe harm to one person or major harm to many people

Grade B – cause serious harm to one person or moderate harm to several people

Grade C – minor harm

There were 176 Grade B incidents, 325 Grade C incidents, and 38 near misses in the report, a total increase of 8.5% from the previous year.

Improved clinic policy since the incident

There were atleast three opportunities where this incident could have been avoided but:

  • The report of the screening results was not properly read or signed by the clinician in the pathology laboratory
  • There was no way to ensure that the screening reports are reviewed by the treating clinician
  • The clinic did not have a proper system of operation to see if the reports are allocated to any staff member to review before treatment.

“After recognizing that a serious incident had occurred we worked closely with the family and the Nuffield to find out exactly what happened and how risks could be minimized in future,” a spokesman for Frimley Healthy NHS Foundation Trust reportedly said.

The organization says that all lessons from this sad incident have been learned and that the following changes have been made in the process:

  • A new management process for cases with abnormal results—regarding proper receipt, assessment, and action to be taken
  • The treating clinician is supposed to review all abnormal results and discuss them with the patients before administering any treatment
  • The pathology labs are also required to specifically highlight any abnormal findings

HFEA chairwoman Sally Cheshire said the report “outlines the importance of us working together to ensure patients, donors and the donor-conceived get the highest possible quality care”.

Drop in multiple pregnancies

In a positive development, the report found that while IVF pregnancy rates have grown the risk of having multiple births after IVF has significantly reduced since 2009.

Multiple births are seen as a big risk in fertility treatments as half of twins are born premature and underweight, and even women carrying multiple babies are a greater risk of miscarriage.

Be careful while selecting your clinic

If such cases are being reported in the UK, where medical regulation is quite strict, you must be extra cautious while dealing with fertility clinics in some other parts of the world.

Carefully select your IVF clinic

The growing demand for ART treatments has led to mushrooming of fertility clinics in India, but only 30% of all IVF clinics are registered with National ART registry of India (NARI), according to an exhaustive Ernst & Young report.

Lack of a proper regulatory framework in the country further raises concerns as these technologies are highly sophisticated and quite expensive. While Infertility Aide strictly recognizes and mentions only reliable clinics that meet all the basic requirements, we also urge you to be careful while selecting your fertility clinic and doctor.

It is not common for an IVF baby to be born to cystic fibrosis but do you know of any such incident? Please share in the comments below.
Notify of
Inline Feedbacks
View all comments

Sign In


Reset Password

Please enter your username or email address, you will receive a link to create a new password via email.