Preemie twins on the mend

Posted on 25 February 2022

Having spent the first 373 days of their lives in the neonatal intensive care unit (NICU) at Mediclinic Panorama, the Malan twins are about to turn three.

Two blonde-haired toddlers are dripping ice cream on the floor while they contemplate what’s next: minutes later Benjamin decides to march around the playroom blowing a plastic vuvuzela, while twin brother Samuel busies himself with a puzzle – but jumping on the couch is just as likely to be his next activity. “They’re extremely busy,” says mom Siske Malan. “They’re not scared of anything – I think extreme sports will suit them in the future!”

It’s a normal family scene, but for the Malans, watching their young sons play is nothing short of a miracle. For over a year, the premature newborn twins were confined to the neonatal intensive care unit (NICU) at Mediclinic Panorama, attended to by a dedicated team of nurses and specialist doctors.

“I was 12 weeks pregnant when we found out we were having twins,” Siske recalls. But this happy news was blighted as scans detected Samuel had hydronephrosis (severe dilation of the kidneys) and required a stent in vitro. At 24 weeks, Siske started leaking amniotic fluid and was put on bed rest.

Two weeks later, Samuel went into distress and doctors had to perform an emergency C-section. Then, after three months on a ventilator in the NICU, the Malan preemies were diagnosed with pulmonary interstitial glycogenosis (PIG) syndrome, a serious – and rare – developmental disorder of the lungs. “This was when we realised no one could answer our question of when the boys would be discharged,” Siske says. “And we simply leaned into it and rode the rollercoaster. We learned to celebrate the smallest wins – such as a poo diaper – and tried to weather the storms of the dark days when their oxygen levels and heart rates took a dip.”

For the first three months, she and her husband Marnitz visited their babies every day. “But when the paediatrician explained their lungs weren’t reacting the way they wanted them to, we realised it wasn’t a sprint, it was a marathon,” the first -time mom recalls. “We needed to reconsider how to keep our strength up for the long haul. In addition, as a NICU parent, you realise you are a walking petri dish of germs – and even the smallest sniffle can be profound if you pass it on to a baby fighting for its life.”

At home, the twins’ nursery lay empty. “It was extremely emotional for me,” says Siske. “We kept the door closed and I could only go in if I had someone with me. We had loads of newborn clothes that they outgrew without wearing as they lay in their incubators at NICU.”

And then, after many tears, triumphs, prayers and 373 days of expert medical treatment, the twins were finally discharged. “At first it was quite overwhelming and nerve-wracking to be on our own with our boys,” says Siske. “We were obviously still so concerned about their health, but after 24 hours, when Ben [who’d been battling to drink] finished his first bottle at home, we could finally take our first deep breath and begin being parents.”

Today, the boys are attending creche and will be celebrating their third birthday in May.

Dr Lou Pistorius, the maternal and foetal specialist at Mediclinic Panorama who implanted Samuel’s stent, says the twins are doing so much better than he anticipated. “Hats off to the parents for standing strong, and to the neonatal nurses and the rest of the team,” he says. “It’s as if I kicked the ball into play and the rest of the team made the goal.”

The Malans say there are not enough words to describe their praise, love and gratitude for the expertise and dedication they received from Mediclinic Panorama. “Every doctor, nurse – even the kitchen staff, cleaners and administrative staff we met – was so helpful and friendly. You cannot imagine what those smiles meant to us during our time of need.”

The boys are about to take their little black scooters out for a ride. “They both still get steroids for their lungs via a pump but we’re slowly decreasing frequency to about once a day,” Siske says. “I monitor their breathing and occasionally have to rein them in from certain activities, but it’s so much less severe than we thought it would be. We are just so incredibly blessed and grateful.”

 

Siske’s tips for NICU parents

• If possible, take a tour of the NICU before having your baby. If they do have to be admitted to NICU, you’ll at least know who is looking after them for the first few hours before you’re able to see them.
• As far as possible, try to understand all the machines that are attached to them, especially the ones that make crazy sounds.
• Don’t think too far ahead – and don’t set goals. Every time there’s a setback, it can really break your soul.