Ada’s* start to life was full of hardship. Born HIV+ to vagrant parents in the days before antiretrovirals were available for pregnant women, she was seven months old and at the point of death when she was found. She was sent to a hospital to recover from an infection, where she stayed for many weeks, and later placed in a temporary place of refuge. Her parents, who were also very ill, never reclaimed her. And so, malnourished and with significant health issues, she was moved to an orphanage at the age of one.

In the absence of antiretrovirals, her disease was controlled through antibiotics and vitamins. Although she received excellent care at the institution, she was moved from one house to another, one house mother to another, with a constant influx of volunteers, social workers, and changing staff. So, despite the love and nurturing she received, her environment was fluid and changeable. The lack of critical bonding and stimulation in these formative years, along with her malnourishment, meant that her brain did not develop in several key ways, leaving her with profound learning disabilities.

It was at this time that she would meet a foreign couple, Angela and Michael* who wanted to adopt her. But it was prior to the signing of the Hague Convention and the ratification of the Children’s Act. So, despite the significant impact of disease on Ada, ongoing attempts for the couple to care for her, and then to adopt her were met with resistance. Home Affairs were unwilling to issue her an unabridged birth certificate, social services opposed the adoption, the social worker didn’t want to facilitate a foreign adoption, so the paperwork took an extra six months to complete, and even the orphanage where Ada was loved and treasured were fearful of assisting them in case they angered the government and lost their funding.

Eventually, the couple were forced to go to the High Court to petition for guardianship (the equivalent of today’s full transfer of parental rights and responsibilities), so they could adopt her in their country of origin. It was a battle that lasted almost two and a half years. Her adoptive parents, who did not set out to adopt, describe it as years of struggle, tears and sleepless nights. When the court finally granted them guardianship and custody, Ada was almost three and a half, and closer to death than anyone knew.

She was grossly malnourished with ulcers in her stomach, parasites and a very high viral load, and didn’t know how to eat real food. Her new parents brought her home days before Christmas, and despite the joy of her homecoming, it took Ada a long time to settle in. Her adoptive mother remembers how she would use just one square of toilet paper because that is what she had been allowed in the orphanage. When they told her that she could use as much as she wanted, it resulted in many clogged toilets.

For a long time, she was so afraid of risking her place in her new family that she would not cry or show any negative emotions with her adoptive parents. Instead, she would smile and answer most questions with a nod, trying hard to be the good girl she thought they wanted her to be. Michael says that they often had to explain to her that no matter what she did, or how she felt, she would be always be loved, and she would never have to leave.

Her mom recalls emotionally the moment when she finally accepted that she belonged. “She cried and cried”, Angela said, “for what seemed like months”. Getting her onto an ARV regimen was also brutal. It was very hard on her little body and resulted in lots of vomiting. She eventually needed a feeding tube. It would be a year-and-a-half-long ordeal to get her to a weight where she could fight off illness. Much later, her doctor confided that she would almost certainly have died without the intensive medical intervention she received.

Today, years later, it is Christmas again. We meet Ada in her warm family home, surrounded by Christmas lights, music and the voices of her family; loving grandparents, her mom and dad, her older sister and brother, aunts, uncles, and cousins, all gathered together to celebrate. She is no longer an orphan and is thriving. Now a popular, albeit shy, teen, she has grown into a beautiful young woman, whom her mother describes as kind and caring. She is laughing as she shares a video she had made of her two-year-old nephew with her sister. Despite the learning disabilities which have affected her memory, reading, maths, attention span and auditory abilities, she has developed into a gifted artist, dancer, and film-maker who loves to travel. She still requires a lot of sleep and downtime, along with educational support, but she is healthy, lively and her disease is undetectable. Meeting her, it is almost impossible to believe how traumatic her start in life was.

Not all children are so fortunate though. This Christmas, we should find two-year-old Nkululeko* running around the garden playing “catches” with his three new siblings and the family dog. But he died a year ago at Christmas time. He was just 21 months old.

A sweet, affectionate little boy, he was born prematurely to a mentally challenged mother who was ill and being abused by her family. He spent the first year of his life in and out of hospital in the Eastern Cape suffering from constant vomiting, diarrhoea and respiratory-related illnesses. He only weighed four kilograms on his first birthday when he was diagnosed with severe malnourishment and tuberculosis.

It was at this point that the state determined that his mother was unable to look after him properly. At 14 months, he was removed from her care and placed with a safety parent, where he finally began to flourish. He gained weight and started reaching his milestones. Although generally cheerful, he would get very distraught when he was tired or scared and would cry uncontrollably to the point of vomiting. The harder he cried, the softer his voice would become. But his safety mom said that when she held his face in her hands and made eye contact, he would feel comforted and calm down. And he loved his food. Having been hungry his whole life, he had no ability to stop eating when he was full, so he had a tendency to eat until he was sick. His safety mom was careful to control his portion sizes and limit diary which seemed to lessen the vomiting and diarrhoea. She used allergy medication and nasal sprays to keep him from being congested. At night, Nkululeko slept in a camp cot in her room so she could suction him if he began coughing. Despite the physical challenges, he loved his safety mom and “siblings”, the other children in her care, and even his doctors were impressed by his progress.

But then the unthinkable happened. At the end of November 2017, Nkululeko’s social worker contacted his safety mom to say that the safety order had lapsed. She was screening foster parents for him but needed more time to do so. She, therefore, wanted the safety care order renewed so he could remain in his safety mom’s care until she could place him in a foster family. But when they went to court to have the safety order renewed, the commissioner ordered his immediate removal from his safety mom. No reason was ever given, and in the absence of another home-based care environment, Nkululeko was placed in an institution with a hospital layout, where babies sleep in the rooms at the end of the corridor and spend most of their time in their cots.

According to his safety mom, the institution prefers not to take babies because of their facilities, and they allegedly didn’t want to admit Nkululeko. But the Commissioner was adamant. His distraught safety mom packed him a bottle, snack, some nappies, along with a detailed list of instructions about his medical condition and history. She didn’t ever see him again.

Three weeks later, just before Christmas, he was found dead in his cot, entangled in his blankets. No one heard him cry, and although they performed CPR, it was too late to save him. His social worker was on leave at the time of his death, so his biological mother (and his safety mom) were only informed that he was dead almost three weeks later.

On hearing about Nkululeko’s story, the Johannesburg Child Advocacy Forum referred it to the Human Rights Commission. To date, there has been no report on why or how he died, or why he was removed from his safety mom’s care. To make his story even more tragic, one of the foster parents being screened for him was a paediatrician working in a community clinic. He should have been safe with her, and her three adopted children and the family dog this Christmas.

Although it would be easy to blame the institution for Nkululeko’s death, they had little option when faced with an instruction from the court. In addition, most institutions in South Africa are at capacity and inadequate government funding and a lack of donors have left them with limited financial resources.

Studies have also shown that as many as 30% of the children in institutions have disabilities, as opposed to approximately 10% in the total childhood population. For some of these children, especially those abandoned by their biological family, an institution is their only care option.

Little Siyabonga* is one of these children. Siya, as he is affectionately called, lies in his cot staring mesmerically at the colourful fish mobile above his head. This beautiful nursery with light streaming through the windows and a riot of colourful Christmas decorations hanging from the roof and walls is home. Now seven months old, he has spent most of his little life in hospital. Siya was born four months prematurely after an illegal abortion. The hospital social worker’s report indicates that his father had been murdered and his mother was offered a scholarship to study overseas when she discovered she was five months pregnant. Neither family knew about the pregnancy, so she took illegal drugs and aborted him. He was born alive, albeit incredibly tiny at just 1.2 kilograms. While he was in neonatal ICU, his mother abandoned him, leaving an incomplete address behind. No one knows where she is now.

When Siya was two months old, he was discharged and brought to his current home. But within three days of being at the baby home, he started having difficulty breathing. By the time the distraught staff managed to get him admitted to the government hospital, Siya was close to organ failure.

The specialist who saw him diagnosed hydrocephalus and was dismayed that the hospital where Siya was born had discharged him without putting in a shunt. He also diagnosed a rare and highly contagious bone infection. Siya had to be isolated in ICU for a full month before he was clear of the infection and spent a further month in hospital. He finally came home after the shunt had been inserted, but his health was fragile.

In addition to the hydrocephalus, he has severe cerebral palsy, a growth on his chest, a squint and potentially a heart defect which can only be diagnosed when he sees the cardiologist in March. Staff at his baby home recognise that he will probably never be adopted, nor will he be able to live independently. They are hoping to get him into a special needs home in January. For now, little Siya is unaware of his future and the lifelong price that he will pay for his mother’s illegal abortion and his massive prematurity. As the aunties from the home quietly sing “Silent Night” to him, his gaze never leaves the fish.

However, not all children made “unadoptable” through disabilities spend their lives in institutions.

Thato* was the first child to be adopted out of his special needs institution. Thato’s eyes are shining as he watches his mom put ornaments on the Christmas tree. He is spending his second Christmas at home with his adoptive parents, Amy and Tom*, and excitement is at fever pitch. Like most seven-year-old boys, Thato has a ball in hand which he bounces speculatively as he recites all of the items on his Christmas list and “counts sleeps” until Christmas. Amy laughs as she explains that he normally counts sleeps until he can go to school, but now he has added sleeps until Christmas.

Later, while he is at his much-loved school, Amy recalls how Thato was born prematurely, a tiny 1.1 kilograms, and abandoned at the hospital where he was recovering from respiratory problems. When he was well enough, he was moved to the same baby home where Siya now lives, and diagnosed with mild/mixed cerebral palsy that mainly affects his legs. When Amy, who was volunteering at the baby home, met him he was eight months old and lagging in physical and cognitive development. But he had no problems with breathing or eating and was just as active as the other babies. She also remembers his beautiful smile and giggle, and how fiercely determined he was (something that remains to this day). A trained nurse, she spent ages working on stretches, sitting and standing, rocking with and praying for him. So, she was heartbroken when Thato was moved to an institution specialising in children with disabilities six months after she arrived.

She didn’t forget him though, and years later, when she and her husband were ready to adopt, they chose not to adopt in their home country. Instead, they set their hearts on adopting Thato. Their adoption process was complicated by it being a “pre-selected” adoption (one where the child is already known to the parents), something the South African government does not generally support irrespective of the child’s best interests. In addition, his institution, which at the time had never had an adoption, was concerned that Amy and Tom would adopt him and then tire of looking after a special needs child, and would dump him back into the system in a foreign country away from his culture. But they persevered, and after months of making the social worker look for a suitable adoptive match for Thato locally, the South African authorities were persuaded that Amy’s prior knowledge of Thato and his disability would be to his advantage. The adoption took 18 months and at the age of six, Thato came home for the first time.

Like Ada’s mom, Amy is quick to acknowledge the role of the institution in Thato’s early life. Thato was diagnosed with reactive attachment disorder while he was still in the institution and it has been an ongoing struggle. But his caregiver at the home was already working on it prior to the adoption, limiting the number of workers and volunteers in his life, taking him for play therapy and managing his medications.

His emotional development was hindering his ability to learn new things, and the multiple languages spoken at the home led to him struggling to communicate, which further increased his frustration. Like most institutionalised children, he was also malnourished (not because of a lack of food, but the wrong kind). Above all, he needed one-on-one attention which is impossible in an institution.

The medical interventions that Amy and Tom provide help to deal with the tightness in his leg muscles allowing him to walk more freely and an upcoming operation should radically change his ability to walk in future. Just over a year into the adoption, Thato is a happy, busy boy who loves his food, his school, with all of his teachers and therapists, and his family. My lasting memory of him will be of a small boy catching snowflakes on his tongue and that lovely, willing smile.

Back in South Africa, our last stop is to meet two children who are slightly different from the rest. They are not disabled, nor were they abandoned or aborted. And yet, of all the children we have met, they are probably the most at risk. Now three and two, Jordan* and Finn* have been in care since their parents were arrested for the abuse and murder of their half-brother two and a half years ago. They were placed in their institution as a lifesaving intervention, but this Christmas may be their last in care.

Ironically, the conviction of their mother for negligence and their father for murder has made their future uncertain as authorities seem determined to reunite them with extended family. The Children’s Court will rule in January about who will have custody of them, but it is already common knowledge that their maternal grandmother has applied for custody which authorities are endorsing, and their paternal grandmother has applied for visitation.

There are many troubling things about this case. Women and Men against child abuse (WMACA), who monitored their parents’ trial, emphasise that although family preservation is the goal of much of our child protection system, it shouldn’t happen at all costs. They also ask significant questions about what makes a family.

WMACA spokesperson, Luke Lamprecht explains that they are challenging what he calls the “benign granny” myth, contending that respectively, these two grandmothers raised a child killer and someone capable of criminal negligence that resulted in a child’s death. They can, therefore, not be seen as benign. The murder of Jordan and Finn’s brother took place on the paternal grandmother’s property, and their maternal grandmother has developed a reputation for her belligerent and confrontational approach to the independent observers who were attending the murder trial to ensure that justice was done for her own grandson.

Equally worrying is the fact that the statutory agencies overseeing this custodial process are the same ones who investigated the couple after a doctor, having found suspicious injuries on their son, reported them for suspected abuse. The social worker who investigated seemingly ignored the doctor’s report, and failed to open a children’s court enquiry, instead independently determining that the children were not being abused. But three short months later, Jordan and Finn’s brother was dead.

When their parents were arrested, the same authorities decided that Jordan and Finn were at risk, and rushed to remove them from family care. But following the conviction, they appear eager to return the children to that family, regardless of what is in their best interests. The social workers who are making the recommendation for reunification are allegedly seldom present at visitation when the children’s maternal granny meets with them, nor have they met with the children to find out how they are reacting to time spent with their grandmother. Only the institution, therefore, knows how negatively Jordan responds to the visits or hears her crying when she is forced to see her grandmother. There is also the question about whether their mother, found guilty of the negligence that resulted in their brother’s death, will have access to the children once she has served her prison sentence.

This Christmas Jordan and Finn are safe and happy, sitting on a colourful mat playing with Finn’s Christmas present, a large yellow dump truck and Jordan’s purple unicorn, surrounded by caregivers who love them and loads of playmates. But the future looks uncertain for them.

Like all the children we have met this Christmas, the decisions made by adults (biological and adoptive parents, the courts, social workers and institutions) will determine where they will be this time next year.

To quote Lamprecht, “if it takes a village to raise a child. It also takes a village to kill a child”. We can only hope for a happy outcome where they will be loved and treasured like Ada and Thato, rather than the uncertain future of Siya, or the tragic one of Nkululeko. It is too late for Nkululeko, but not for Jordan and Finn, so we will be watching. DM

In loving memory of Nkululeko* (19.03.2016-22.12.2017)

* names changed to protect their identities