Pain of loss sees mother start NPO

The observation of World Down Syndrome Day on March 21 gives opportunity to organisations and individuals to spread awareness about genetic disorders and the challenges faced by patients and families.

One such individual is Lumka Nhonho. She was moved to start raising awareness about genetic disorders, mainly Trisomy 18, after losing her baby to the condition.

”In 2021 I was pregnant and halfway through the pregnancy the doctors picked up on some abnormalities with the baby.

”I went to see a genetics doctor who explained to me that my baby had a genetic disorder that was not compatible with life. They gave me the option of terminating the pregnancy but I refused,” said Nhonho.

In June, Nhonho gave birth but the baby was sent to ICU immediately. After a 12-day stay at the hospital, the baby died due to a lack of oxygen to the brain and lungs.

“It was very painful. I was lucky enough to have access to research material and doctors who could help me understand the genetic disorder better. Unfortunately, not many mothers have this kind of information at their disposal,” said Nhonho.

“I want to help mothers learn more about the genetic disorder so they can be better prepared if they find themselves in this kind of situation.”

Nhonho’s baby was diagnosed with Trisomy 18, also known as Edward’s Syndrome, which is a chromosomal abnormality that often results in stillbirth or an early death of an infant.

Not many parents are aware of genetic disorders like Trisomy and Nhonho has vowed to change this.

“I want to start a non-profit organisation that is dedicated to teaching mothers and raising awareness about different genetic disorders.

”The organisation is not yet registered but the groundwork has already been done,” she said.

A fundraising event for the organisation, to help get it off the ground, will be held at the Cambridge Bowling Club at 10am on Saturday.