Tiny Miracles, Mighty Love: Soothing Sounds for NICU Prem Babies

In the heart of every NICU, tiny miracles are fighting their first battles. Parents of premature babies know the overwhelming emotions of worry and helplessness that fill these moments. But amidst the beeping machines and anxious faces, there’s hope.

RSV, a common virus, can pose serious risks to vulnerable preemies. Imagine the power of your heartbeat, your voice – a constant reminder of your love, soothing your baby in their most fragile state.

That’s the incredible gift of the Clop device, a vital connection between parent and child, a beacon of comfort in the NICU journey.

Through the Hearts2Help campaign, AstraZeneca is proud to bring this lifeline to families across South Africa. These precious devices for premature babies, help them feel your presence even when you can’t be there.

Together, we can wrap our tiniest warriors in love and strength, making a difference, one heartbeat at a time.

Wade's Story

Nicolle Grosskopf is the proud mum of a healthy, happy and thriving little boy. His name is Wade but Nicolle calls him her Little Little – her warrior child – because as a preemie Wade had to fight hard to make his way into the world. In fact, there was a point in Nicolle’s pregnancy where things were so bad that she and her husband Wayne were unclear if Wade would be born at all. Stillborn yes or at best with severe brain damage. Their medical team even suggested they consider terminating the pregnancy. The prognosis for their unborn child was not at all good!

This is Wade’s story.

Preterm Baby, Warrior Child & Three Times RSV Survivor

Up until 23 weeks into her pregnancy Nicolle was healthy and everything was on track. But all that changed when she developed meningitis and encephalitis. Things went downhill fast. Nicolle became incredibly ill and ended up in hospital in a coma for a few days. Her husband was counselled that if she woke up, she was likely to have brain damage and there was little chance of the pregnancy continuing. The medication she needed was not “pregnancy friendly” and the couple was warned that the side effects could be detrimental to their baby. Their world was completely shattered.

Nicolle came through her illness but at 25 weeks more bad news followed. Her scan indicated that their baby had severe early onset IUGR – he was not growing as he should – and her amniotic fluid was very low. He had fluid on his brain and his arms and legs were too short. Nicolle placenta had also calcified. Things looked very bad. The only thing that was certain was their stress.

It was a very traumatic time but despite the imminent threats to their baby’s health and life, the couple remained hopeful.

Born at 34 weeks

Nicolle was put on strict bed rest and she managed to continue the pregnancy to 34 weeks. On the 18^th of May 2018, at 8:21am – weighing 1,8kg – Wade was born via C-section. He didn’t make a sound when he was born and was rushed to straight to the NICU.

Explaining how she felt at that time Nicolle says:

“I had to come to terms with the fact that I would not have a natural birth which was yet another disappointment. But the stress of not knowing our baby’s condition and how he had been affected invitro – trumped that grief. We were silently terrified.”

Adding to this she says, “I cannot begin to describe the emotional anguish we felt during what should have been a blissful and blessed time. The anxiety of the unknown was overwhelming! We were not prepared for a premature birth or a period in the neonatal intensive care unit. It was incredibly stressful and such a lonely experience! But despite all our fears – we pushed through. We had to!”

As a pre-term baby Wade had plenty of challenges. He had immature lungs and needed help breathing. His temperature had to be kept constant and he was jaundiced and needed phototherapy. He also needed to grow! None of this is uncommon in pre-term babies.

“To our enormous relief – all his blood tests, lumber punctures, scans and MRIs came back normal. He was otherwise perfectly healthy and just needed time. Time to grow.”

Going home was hard

Three weeks later Wade was discharged. Little did Nicolle know – that their hospital stay was actually the easiest part of their journey! They were totally unprepared for what happened next.

“I had to go back to work when Wade was four months old, at which point he went to baby school where he contracted the Respiratory Syncytial Virus – or RSV.

He began with a snotty nose and a cough which we were assured by his teacher was normal for babies starting “school”. We treated his “creche syndrome” symptoms. But his condition abruptly changed. He woke with a terrible fever and coughing fits that made him vomit. We rushed him to our paediatrician and he was immediately hospitalised for treatment.”

It took Wade two weeks to get over the RSV infection but his lungs were very sensitive to germs and he regularly developed bronchiolitis thereafter. RSV, and the risks of the respiratory disease for pre-term babies, was not something the Grosskopf’s were educated on.

Unaware of the risks of RSV

We didn’t know at the time that pre-term babies are at greater risk of developing severe RSV disease. We didn’t know that babies and children can be hospitalised and even die from the virus.

“RSV is one of the most common causes of childhood illness – and most children get RSV at least once before they are two years old. But we were unaware of just how serious this virus is for babies born at less than 37 weeks, or with certain lung and heart conditions,” explains Nicolle.

“Had we known more about it, we would most certainly have asked our doctor to prescribe the preventative medication that’s available before we left the hospital.”

This same story was repeated when Wade contracted RSV at 12 months during the COVID-19 pandemic. Again, he was hospitalised.

All three of Wade’s RSV infections included time in hospital and because Wayne works abroad – Nicole was completely alone during their RSV crisis.

“Seeing my baby on oxygen was so tough. It was a very emotional experience and totally drained me. Had I known how serious RSV can be – I would done things differently,” says Nicolle.

Nicolle and her husband had to learn about RSV and how to prevent its transmission. They did everything they could to prevent Wade being exposed to environmental factors that can spread the virus.

Explaining the measures they took and still take to keep him safe – she says:

We don’t let anyone kiss him
No one ever smokes around him
And we wash our hands and keep all our surfaces and toys sanitised
But he goes to school so we assume that’s where he picked it up – but it could have been anywhere really.

Nicolle says that having a preterm baby is an unimagined, emotionally overwhelming time. It’s frightening and incomprehensible things happen to your baby. You have to educate yourself, ask questions and take control.

Advocate for your baby

Her advice to moms of pre-term babies is:

“Don’t be afraid to keep friends and family away if they are not 100% well. Make them wash their hands, sanitise and wear a mask around your child. And there can’t be any cuddles and kissing. It’s just too risky. And there’s no vaccine for RSV so ask your doctor if your baby qualifies for preventative medication.”

“I call Wade my “Little Little” because he was so so small. He’s such a brave boy and has already endured and overcome so much in his short life. He proved everyone wrong and he’s my inspiration.”

Nicolle’s experience moved her to start Little Little Preemie (an online Preemie shop), as well as a support group for NICU moms – so that she can help them navigate their journey with a preterm baby.

Today Wade is a blossoming healthy child and he’s met all his milestones despite his initial prognosis. “He has allergies and his lungs need some additional support – but he’s strong and happy. We are blessed. But not everyone’s story ends like ours. As a parent of a pre-term baby – you are your child’s only advocate. So, do what you need to do to keep your little miracle safe.”

Medical Prevention

There is no vaccine for RSV, but there are medicines available that can help babies and young children born at high risk for serious RSV infections.4

References: 4. Resch B. Product review on the monoclonal antibody palivizumab for prevention of respiratory syncytial virus infection. Hum Vaccin Immunother. 2017;13(9):2138-2149. doi:10.1080/21645515.2017.1337614