SA conjoined twins’ successful surgery
Siphosethu and Amahle were joined at the skull, but after a risky surgery they’re recovering – and now they love to look at each other
ALL she wanted to do when her twins were born was to cradle them one at a time and sing them to sleep while they breastfed together. But that wasn’t an option for Ntombikayise Tyhalisi. Her daughters, Siphosethu and Amahle, were born craniopagus twins, which means they were joined at the head with a merged skull and shared blood vessels.
Now, after cutting-edge surgery, Ntombikayise has her wish. She can cuddle each baby in turn and no longer has to feed them separately.
“I’m overjoyed,” Ntombikayise says. “I wasn’t expecting to leave the hospital holding my children in each arm.”
The successful separation surgery was performed at Cape Town’s renowned Red Cross War Memorial Children’s Hospital. Craniopagus twins are the rarest form of conjoined twins, occurring in one in every 50 000 births.
According to Professor Anthony Figaji, the head of paediatric neurosurgery at Red Cross, the birth defect occurs because of the incomplete fusion of a fertilised egg. “Most craniopagus twins are stillborn or don’t survive long enough for surgery to be undertaken,” he says.
Since their birth in January the twins have been in and out of hospital, undergoing a series of tests to see how surgeons could safely separate them.
“In this case, the fact that the connection didn’t involve shared brain tissue or major blood vessels going from one twin to the other [was in their favour].”
Still, Professor Figaji and his team had their work cut out for them. It took a team of eight paediatric neurosurgeons and several plastic surgeons, anaesthetists and nurses to perform the surgery. Thanks to new technology, the six-hour op was done in just one-and-a-half hours.
The multidisciplinary medical team planned it using a 3D model of connected skulls. After the twins were placed under anaesthesia, the surgeons cut through the skin and soft tissue separating their skulls. Once the babies were successfully separated, the reconstruction of their skulls started.
Their recovery period was quick, Professor Figaji says. “Almost immediately after the surgery they were awake and feeding,” he says. “We expect them to develop normally, and they shouldn’t need any further treatment.”
Being fused crown to crown meant the twins hadn’t seen each other’s faces – now they often turn and look at each other in their crib, Ntombikayise says.
“From the delivery team to the nurses who helped me with clothes after labour, thank you so much.”
LIKE most expectant mothers, she spent the months leading up to the birth eagerly awaiting her baby’s arrival. “I was two months along when I found out I was pregnant,” Ntombikayise tells us. “I was told I was expecting one child.”
There was no indication anything was wrong. Ntombikayise, who is from the rural hamlet of Ngcingwane near Dutywa in the Eastern Cape, had ultrasound scans during her pregnancy and doctors told her everything seemed okay.
This pregnancy, however, wasn’t as smooth as her previous ones but the 31-year-old mom simply put it down to
being older. She was 23 when she became pregnant with daughter Ethandwa (8) and five years later she welcomed son Bonke (3).
But her belly really ballooned with her third pregnancy. “By the time I was eight months pregnant my stomach was very large and abnormally shaped, almost like an oversized rugby ball with green veins,” she recalls.
“When I went to my antenatal checkups, the nurses told me I wasn’t expecting twins, they said the baby was just really big.”
When she went into labour at Madwaleni Provincial Hospital (near Elliotdale in the Eastern Cape) on 30 January, everyone was taken aback. “I had a C-section and during the surgery, the look on the doctor’s face made me realise something was wrong.”
She was stunned when the doctor said she’d given birth to twins. Siphosethu and Amahle made their way into the world joined at the head. “Everyone in that delivery room was shocked.”
With no other women in the family to turn to, the single mom felt completely unprepared to take care of the twins and their special medical needs.
Ntombikayise lost her job as a caretaker last year and didn’t know how she’d survive raising four children. She lives with her two older brothers, who she relies on to make ends meet.
When the twins were born she felt hopeless. For the first few days, her little girls were fed through tubes.
“Seeing them lying there while other mothers breastfed freely really broke my heart. I just kept thinking, ‘What am I going to do?’”
But the nurses at Madwaleni Hospital kept telling her she’d get the help she needed.
HELP came from Red Cross Hospital, which has a neurology clinic dedicated to children with complex neurological problems. When the twins were barely a week old they were transferred to the hospital in Cape Town for treatment.
At first Ntombikayise was terrified. She knew very little about conjoined twins and worried the surgery wouldn’t be successful. “When I arrived at the hospital, I had prepared myself for the worst,” she says. “I thought I would leave with one of the twins – not both.”
To make matters worse, she felt terribly alone because her family was in the Eastern Cape. On her own and penniless, she couldn’t afford basics such as food and clothes but Ntombikayise was welcomed with open arms by the staff at Red Cross.
They assured her the hospital was the best place for her daughters to have their separation surgery and brought clothes for the mom and babies.
The kindness of strangers kept her going through those dark days. “I felt like everything was going to be okay because of all the support and reassurance I was being given,” she says.
The twins spent four weeks in hospital while doctors conducted tests. During that time Ntombikayise fed her babies separately by expressing breast milk into a bottle for one and breastfeeding the other. After bathing them, she would dress them from the bottom upwards.
Now the twins have been separated, getting them ready is so easy she can do it with her eyes shut.
Siphosethu and Amahle have adjusted well since being discharged. They share a special bond and love to see and hear each other.
The twins have overcome huge medical challenges but not everyone is thrilled they’re home because of the stigma surrounding conjoined twins. Ntombikayise says she’s had to put up with a lot of rumours in her village.
“At first they really frustrated me but now I don’t care – what other people say doesn’t matter as long as I know my babies are okay.”
As tough as it’s been, she says the hospital staff have given her hope for humanity. “I’ve truly seen the spirit of Ubuntu through everyone who supported me and my babies during this difficult time.
“I’m grateful from the bottom of my heart.”
‘I THOUGHT I WOULD LEAVE WITH ONE OF THE TWINS – NOT BOTH’