So, when a guest who looked like she just tumbled out of the pages of Vogue sat to have a coffee in the garden with me, the contrast between us could not have been more pronounced. Naomi is one of those Afrikaans women who effortlessly radiate style. It was no different yesterday. Her black hair was perfectly styled, her face made up with such care that it looked as if she were not wearing make-up, and she was dressed in a cashmere coat with a perfectly matched lamb-wool scarf. Her breasts straining against her knitted top was the only telltale that she has recently given birth.
Naomi’s been with us for two and a half months. Her husband and two of their children are on their farm in the Free State while Naomi spends her days in Johannesburg by the bedside of their little girl; Hope. Hope was born with a heart-defect, and on the day of her birth, was medevacked to Netcare Sunninghill. Since then, her tiny little heart has received two major cardiothoracic surgeries and many other procedures.
Hope was doing well, but because she got tired so quickly, was unable to be discharged because she could not feed properly. (She was on a nasogastric tube, but could not be discharged with it and her little body kept falling asleep when she had to latch on to a bottle for her expressed breast milk). A difficult decision was made to surgically insert a PEG so that Naomi could take Hope home and feed her this way.
While we sat in the garden, Naomi shared that the doctors said Hope was ready to go home and leave the NICU (neo-natal ICU). Naomi was absolutely elated at the thought of their family reuniting and being back in her own surroundings, but she was simultaneously petrified. Hope is still very ill and fragile.
Over the past decades, we’ve walked the road with many babies and their parents who come to Netcare Sunninghill for their renowned paediatric cardiac unit. At the moment, we have a young man, Oliver, with us again. We have walked the journey with him, his parents, and grandparents for twelve years now. We’ve become such good friends that my family has, in fact, gone to their beautiful farm in the KZN midlands twice. Oliver keeps beating the odds, and despite many lengthy hospital stays, missing school, and suffering through difficult recoveries, he keeps reminding us that life really is just how you choose to deal with the cards you are dealt.
Last year, Oliver was attacked by a dog, which triggered a staphylococcus infection. For most of us, this kind of recovery would be quick and easy, with a few stitches and some antibiotics, but for Oliver, it was not. He ended up spending 98 days in Netcare Sunninghill and spent Christmas, New Year’s, and his birthday in the hospital!
Because of Oliver’s poor immune system, his parents made the decision to take him out of school because he was simply too immunocompromised and therefore vulnerable. He was devastated! He had been looking forward to being a prefect and finally being the big fish in a small pond. Oliver’s mom has quit her job and now homeschools him, but despite not going to school, he still rides his horse, runs around with his dogs, and has picked up on his grandfather’s love of the area’s rich history of the Anglo-Boer War. Later this year, Oliver is scheduled to have another invasive surgery, but until then, he will just keep being a boy, coming of age amidst the rolling hills of KZN.
We’ve celebrated babies who return annually for their check-ups, marvelling at the miracles before us. We’ve watched children who once lay attached to tubes and ventilators become teenagers and university student. We’ve also stood with parents who returned to the lodge with empty arms, knowing their child’s nursery would remain empty too. Not every tiny heart can be repaired.
There are times when I cannot bear to watch moms and dads suffer such awful losses. Fatima stayed with us for months. She was from Morocco and did not know anyone in South Africa. Her beautiful newborn, Ahmed, was medevacked shortly after his birth and received surgery. He recovered and returned to Sunninghill Recovery Lodge. We all loved holding and cuddling little Ahmed while Fatima bathed or napped. She became part of our family, and despite some language barriers, we would often share a joke or stare in wonder at little Ahmed.
After two months with us, Ahmed developed complications. He went back to the hospital, and despite fighting like the real warrior he was, he passed away. In a flurry of chaos, we helped Fatima repatriate his little body back to Morocco. Because of the red tape, Ahmed did not get home in time to be buried according to his parents’ strict Islamic religion, and we did not get to say a gentle goodbye to Fatima, but she will always have a special place in our hearts here.
Regardless of the outcome of these intense and unexpected medical journeys, something that amazes me is that parents who come back to visit – those who bring their healthy teenagers to visit and those who come for remembrance of all they have lost – never regret the treacherous path of parenthood they’ve had to walk.
When my dear friends, Melissa and Johan, came to see me after little Christo passed away at age seven, I was curious about something. I met them straight after Christo’s birth and witnessed the months and months of ICU stays, countless surgeries, setbacks, miracles and then more setbacks. I risked a question and asked them: “If you knew what lay ahead, would you choose it again?”
Without a moment’s thought, they both said, “Yes. Absolutely yes!” The pain is unbearable, and the years of parenting him were heart-wrenching, but it does not even begin to compare to the love they had and feel grateful to have shared.
All these parents have one thing in common: they carry hope and fear at all times. I suppose that is the risk of loving someone for us all. Naomi is joyfully able to take her fragile little girl home for the first time, not knowing what the future holds. Melissa and Johan must wake up every day, missing that little boy who filled their home for seven years. Fatima will forever mourn the fact that she never even got to take Ahmed home. Oliver’s parents live in hope that one day he’ll be able to return to school.
As I sat with Naomi in my muddy shoes, I realised that every time we love, we take a gamble. Whatever the cards we are dealt, hope and fear will always play a role because nothing is ever guaranteed. The lives these children get to live, or not live, will not be measured in days, but in how drenched they were in love.
And as for me and my team, we know that our tiny role, in this corner of the world, is just to show up for these parents, making sure that no matter where they journey takes them, they never walk alone.