“I didn’t simply wake up one morning thinking that caring for dying babies would be a good idea. Death and the acceptance of it, like most things in life, is a process. It involves giving yourself. Giving your best, your worst, your fears, your hopes, and dreams; giving yourself completely and hoping that your heart won’t shatter into a million pieces. It does. On this journey, you need to allow your heart to shatter over and over and over again. There is so much love on this journey, and so much hurt, all wrapped up in this beautiful tapestry called life.
My husband, Christoff, and I moved from Cape Town to rural Zululand eleven years ago. Newly-weds, we were on what was supposed to be a one-year adventure to pursue rural medicine. Christoff, a medical doctor, and I, a social worker, were excited and starry-eyed. We envisioned helping the poorest of the poor in South Africa, all while having amazing sun-kissed tropical beach days, going on 4×4 camping adventures, and living the type of life which most people could only dream of. Looking back now, I realize that we did in fact have those adventures.
We frolicked along deserted tropical beaches, often the only humans in sight, watched giant turtles lay eggs and later tiny baby turtles follow the moon to the ocean. We experienced unfiltered traditional Zulu festivals and cuisine, went on amazing game drives in the African bush, and lived a generally carefree life. What we didn’t know when embarking on this new adventure was that it would lead us into our calling and ultimately what we hope to do for the rest of our lives, caring for abandoned babies with end-of-life needs.
Meeting Our First Child
It all started towards the end of December 2011 with the cutest baby girl that I had ever seen. Hiding her big, brown almond-shaped eyes behind her hands, baby Ncami ducked behind one of the orphanage workers who had accompanied her. I had arranged a Down Syndrome Awareness Day at our local hospital as part of my duties as a medical Social Worker and this precarious little thing was one of the honored guests.
I have always had a soft spot for people with Down Syndrome, as my younger brother-in-law is a part member of the Trisomy 21 club. There was something special about this baby though. As Ncami plucked up the courage to come out from behind the caregiver and flash me a daring smile, my heart exploded within my chest. I went about my responsibilities that day, completely unaware that this little girl would call me ‘mama’ the very next year.
One day, possibly around March, my husband came home from work and asked if I remembered the orphaned baby girl with Down Syndrome from the nearby Children’s Home. She was currently admitted to his ward and was doing quite poorly. Of course, I did! As the days went by, I simply could not get little Ncami out of my head or heart. I ‘knew’ that we were not ready to have children yet, oh the naivety of youth, and rather started entertaining the thought of applying to become ‘weekend parents’ to this precious little girl.
All too soon, we were screened by the Children’s Home, had set up a very wonky second-hand camp cot (we are pro’s now by the way!), bought whatever we thought a baby would need from our limited rural grocery store, and voila – there she was! After that first, rather interesting, weekend, I knew I would struggle to give Ncami back. We had unofficially, officially become her parents.
We unfortunately also realized that she had more serious medical needs than the Children’s Home was aware of. Little Ncami was born to a mother from Mozambique with the father unknown. Her biological mother worked as a domestic worker for a Zulu family in the Kosi Bay area which borders South Africa and Mozambique. Her mother had numerous children and passed away shortly after Ncami’s birth due to AIDS. The employer’s family kindly took in the older siblings but due to Ncami’s extensive needs (Down Syndrome, congenital heart disease, pulmonary hypertension, and hydrocephalus), she was left at the hospital, where she spent her first year of life before being placed in an orphanage.
The months that followed were filled with doctors’ appointments, occupational therapy appointments, speech and language therapy appointments, cardiac clinics; lonely nights with only Ncami and myself in hotel rooms, or crashing at various friends’ houses on the way to and from appointments. Those days were filled with many frustrations, fears, and way too many tears. They were also dominated by the sweetest and most strong-willed baby girl crawling into our hearts, singing her heart out at her own reflection in the oven door, lots of goofy kisses, and lots of laughter.
Ncami was not legally in our care but spent most weeks living between the Children’s Home (a five-minute walk from us) and her own bedroom in our little wooden cottage. Around four months into our journey with Ncami, the moment came when I realized that we had gone ‘all in.’ During a routine cardiac check-up at a large hospital in Durban (which took a ten-hour roundtrip to attend), a callous doctor mistook me for Ncami’s social worker and said, ‘Oh no, she won’t survive. Her lips are already turning blue.’ I burst into tears and very harshly told the man that I was in fact this baby’s mother! The poor doctor felt terrible. I am sure that he was simply rushed and overworked on that particular day, but the damage had been done. The reality was that I had fallen in love with a baby that was dying and there was no turning back.
Ncami’s Heart Failure
Heart failure is not something that is easy to watch. Your heart loses its ability to oxygenate blood and so you breathe, but don’t produce any oxygen. Our little girl was such a trooper. Often too weak to play or even smile, she always tried. She even managed to stand for the first time after turning two. We realized however that her body had become very tired and stopped encouraging too much strenuous activity. She was so brave, so bold, and so beautiful.
The day arrived all too soon, a mere six months after we started caring for our baby girl. I received a phone call from a friend who was covering the Pediatric ward during the night to inform me that Ncami was brought in during the early hours of the morning by caregivers from the orphanage. It was bad and I needed to come quickly. Overwhelming guilt immediately flooded my whole body. Ncami was at the Children’s Home that weekend because it was my husband’s birthday, and we needed a breather. I quickly tossed on clothes and ran up to the hospital. I took one look at my gorgeous girl who could hardly recognize me and knew. This was it.
Staff at the hospital afforded us the time and privacy needed to be with our baby and love her uninterruptedly until the end. She had a few flutterings of life throughout the day at which time she would recognize us, smile, and ask for juice before slipping away into unconsciousness again. She called me ‘mama’ and to everyone’s amusement referred to Christoff as ‘auntie’ as she had never quite mastered the word ‘daddy.’ These were special moments we will always cherish. Later that night, baby Ncami took her last breath while cradled in both Christoff and my arms. We sat there cradling her little body and just like that, she was gone. Her life was a fleeting moment and so was her death.
In the days after the funeral, life in the bush went back to normal. We would once again wake up to the sounds of birds chirping, children giggling on their way to school, and dogs barking in the distance. Life went back to normal, but we were different people now. I don’t know exactly how to describe what had changed, apart from experiencing a depth that had not been there before. I had come face to face with death and was not afraid anymore. I felt something deep within my spirit; we would love and lose babies again. There would be another ‘yes’ to another little one. Only time would tell.
Growing Our Family
The following year I became pregnant with our daughter Illy. She’s adventurous, intelligent, and kind-hearted. She loves fiercely and feels deeply. When Illy was nearly two years old, we adopted our son Joshua. I can write a whole book about Joshua. Joshua is a Martian-child. He was born prematurely to a mother whose body was so ravaged by AIDS that she couldn’t carry her baby to term and passed away two days after his birth. Joshua looked like a little rain frog at eight months of age.
He had no head control, flopped around like a pudding, and struggled to feed. Joshua also has Down Syndrome. Life with Joshua is hectic. We knew something was ‘different‘ about him right from the start. He lacked the ‘typical’ affections which are often attributed to children with Trisomy 21. He never slept and was super loud. He was later diagnosed with Autism Spectrum Disorder as well. Bonding with Joshua was difficult even though he was cute. Yet, somehow we managed and even survived. After seven years of serving in our first Zulu community, Mseleni, we felt that it was time to move.
A mountain was calling, and we heeded that call. Our new community is called Ingwavuma. It’s an isolated, mountaintop community that directly borders Swaziland to the one side and is close to Mozambique on the other. We immediately immersed ourselves into this new life, often lacking basic needs such as water and electricity, and tried to gauge the needs of the people. I never forgot that we would ‘love and lose babies’ again.
Loving Children With Life-Limiting Conditions
The first call came in January 2018. A baby boy had been found dumped in the bushes outside of a soccer stadium in Johannesburg. He was left for dead and at first, was thought to have Down Syndrome. Do we want him? Completely overwhelmed by our own Martian-child at the time, I think we said ‘no’ to baby Si probably about three times in total. But life is strange. It was soon discovered that Si in fact had a condition known as Edwards Syndrome or Trisomy 18. He was not deemed ‘compatible with life’ and would soon pass away. We took him anyway.
Today we run Butterfly Palliative Home in our garden in rural Zululand. With the help of some amazing local ladies, mostly widows, we care for up to six babies and toddlers with life-limiting conditions at a time. There is no government funding available for the type of work that we do, and we soon discovered that we were the only palliative home for children in the whole Province. One of only a handful in the country. We focus on finding babies who have been orphaned and abandoned (like baby Ncami). We collect them from orphanages and government hospitals all over South Africa and bring them home.
We love and nurture them until the time comes to say goodbye. We mourn each one of them as our own. Our hearts break every single time. I gave birth to another perfect little human in December 2019. Her name is Sienna Siyamthanda. She is bold, loud, and stubborn. She is amazing and we are still figuring out how to function as a zoo. My girls love their foster brothers and sisters. Some days are better than others, but we are okay. Loving and losing babies is hard. Days are long and nights are short. But you know what? We wouldn’t have it any other way.”
This story was submitted to Love What Matters by Tarryn Bell. You can follow her journey on Instagram, Facebook, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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