Kempton mom advocates for greater support for NICU parents

Kempton Park resident Simone Jansen van Rensburg is using her personal experience to advocate for mothers whose babies are admitted to the Neonatal Intensive Care Unit (NICU).

Her journey began on June 8, 2022, when her daughter was born at 30 weeks and admitted to the NICU.

Although her gynaecologist informed her on the day that it happened and supported her throughout the process, Jansen van Rensburg says she was unprepared for the emotional impact.

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“I did not realise in that moment that my baby girl was going to be in NICU as everything happened so fast, and the unknown really triggered me,” she said. “She stayed there for almost two and a half months.”

At the time, she did not even know what the NICU was.

She believes more should be done to prepare expectant mothers for the possibility, as complications can arise unexpectedly during pregnancy or birth.

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“I was very traumatised by not being able to experience the first touch, the first feeding time and just to hold her. I was on a roller-coaster of mixed emotions. I remember that I cried and prayed a lot during that time,” she shared.

Her daughter remained in the NICU for nine weeks. During that time, she required a blood transfusion and speech therapy as she struggled to drink. She was also on oxygen for two days.

The experience was made even more difficult by Covid-19 restrictions, which meant she and her husband were not allowed to visit their baby together.

“As it was still during Covid rules, my husband and I weren’t allowed to go in together to see her,” she said.

Jansen van Rensburg says the experience changed her outlook on life.

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She remembers the tears and the moments of joy outside the NICU doors and says she can still hear the beeping of the machines in her head.

“You learn to appreciate every moment of life. It’s just a matter of time by grace. It has made me a stronger person,” she said.

She also recalls the emotional toll of sitting alongside other parents facing even more complex medical challenges.

“When I heard a mother sitting next to me crying and telling me that her baby had to go in for more than one operation and still was not healed, that’s when you realise that life is given to us,” she said.

While grateful for the medical care her baby received, she believes there is a gap in emotional support for parents.

“To be honest, nurses did not always want to tell you what was happening and would say, ‘ Call the paediatrician’. I feel they need to support the parents as well. They chose this profession to help,” she said.

She added that communication around feeding was inconsistent, with some nurses making every effort to assist and others appearing rushed.

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Jansen van Rensburg believes mental support is one of the most important needs for NICU parents.
“Your mind goes through so many things. Did I neglect my baby? Did I do something wrong? The blame comes on you because there is no support at all,” she said.

Advocacy has helped her turn a painful chapter into something meaningful. Although she still becomes emotional when reflecting on the experience, she has found comfort in knowing she is not alone.

“People often think it’s just a normal ward. It’s not. Your baby is fighting, growing without your nutrition and body support in the womb. This is not just a drip and oxygen, it’s a matter of survival,” she said.

She believes the healthcare system does not provide sufficient guidance or emotional preparation for NICU parents.

“There is not even a walk-through or talk-through when it happens. The focus is on the baby, and that’s it. I would like to see support groups, something about what it means to be a NICU mom, what you can and can’t expect. You never know when your phone rings what news you are going to get.”

Both her children have been admitted to the NICU, and she says the second experience was easier to navigate because she understood the process.

“I want to be the voice for those who are unsure. Be strong, take every moment in and spend as much time as possible with your NICU baby,” Jansen van Rensburg said.