It’s a typical day in the Irwin house. In the bustle of family life, 20-month-old twins Amelia and Sarabeth dive into a pile of books while big sister Kennedy, four, cuddles her doll.
“She’s loved it ever since they made it for her at the hospital,” explains mum Alyson Irwin, laughing.
Look again and you can see why. Because Kennedy isn’t hugging just one doll but two, sewn together from their chests to their stomachs. There are two sets of blue eyes gazing directly at the other, two bodies joined. Just like her twin sisters were six months ago.
“The last two years have been a rollercoaster of shock, hope and love,” Alyson, 33, says as she surveys her happy home. “I still can’t believe the miracle of medicine that has brought us here.”
Rewind to February 2019 and it was a very different story. Then parents to two-year-old Kennedy and thrilled to be pregnant again, Alyson and husband Phil, 32, felt like any other couple.
Going for their 20-week scan, Alyson had big plans. “I had paper ready for the doctor to write the sex,” she says. “I was going to give it to my sister, so she’d be the only one to know. I was so excited to see our baby. I had no idea that this would be the worst day of my life.”
As soon as the sonographer began the ultrasound, she asked Alyson who their doctor was. Then she disappeared.
“She arrived and told us bluntly. ‘You’re having conjoined twins. I’ve never seen this before. You’re going to have to decide what to do’,” says Alyson, from Michigan, US. “I went into shock. I just broke down and sobbed.”
Referred to a specialist at another hospital, the couple left with their hearts in pieces. “All we felt was devastation,” says Alyson. “What were the chances our babies would live? What would it mean for the quality of their lives? We were crushed.”
The next day they met the team at Michigan Medicine C.S. Mott Children’s Hospital. “The news was still so hard to process, that the girls shared a liver and were connected from their sternum to their belly buttons,” says Alyson. “But the compassion they showed us was amazing. If anyone was going to help us through this, we knew it would be them.”
Alyson was thrust into a pregnancy a world apart from her first. Appointments every two weeks, with a team of neonatologists and surgeons. Every meeting also included the palliative care team. Because, as their paediatric and fetal surgeon George B Mychaliska explains: “It’s very rare, only one in every 100,000 to 200,000 babies are conjoined in this way. Most are stillborn and of the few who survive, many die shortly after birth.”
At 25 weeks the couple learnt the girls didn’t share a heart, meaning they had a chance of being successfully separated.
“That was always our hope,” says Alyson. “We wanted to give our girls a chance to live separate lives, if it was possible. But no one could say with certainty what was possible.
They didn’t make any special preparations at home. It felt to Alyson too much like tempting fate. But they did talk to Kennedy. Alyson says: “We used language she would understand. We explained that inside my tummy her two baby sisters were stuck together. The hospital sewed the two dolls together to show her what they looked like.
“Kennedy loved that. Like all small children, she immediately and happily accepted what was happening.”
The plan was to get to 37 weeks, but at 33 weeks the doctors saw the blood flow slowing in the umbilical cord that the girls shared. It was time for them to be born.
A huge team was in the delivery room and, through an incision twice the normal size, Sarabeth and Amelia were born on June 11, 2019.
As the scans had shown the girls were locked in a face-to-face embrace, joined between their chest and belly. Alyson remembers: “I got to see them for a second before they were whisked away to the NICU, but the rush of love was incredible.”
There followed 85 days of sharing the girls with a medical team. Scans confirmed separation would be possible, and the operation was scheduled for February 2020, five months later. It was time to go home as a family of five.
So what’s daily life like parenting conjoined twins? “You get very fast, very quickly,” laughs Alyson. “The girls both had feeding tubes and we needed lightning reflexes each time one pulled the other’s out. They kept stealing each other’s dummies. And Kennedy was obsessed with them from the start, wanting to play mummy and ‘help’. We had to be everywhere all the time.”
The girls had tissue expansion surgery, with balloons placed under their skin to allow the separation and reconstruction to take place. Alyson and Phil had to do the injections and as their skin grew it was harder to keep them comfortable.
“It was hard,” Alyson admits, “but we knew the finish line was in sight. Then two awful things happened. The week before surgery the girls caught pneumonia, which was terrifying. Then Covid struck. Suddenly we had no idea when their operation would take place.”
It was a huge blow. But spending those extra months together brought moments of unexpected joy.
“For their first birthday we put them in tutus and had a drive-by celebration, so family and friends could say hello. It felt wonderful that the girls spent their first birthday as one and would spend their second birthday as two.”
On August 5, 2020, the twins were prepped for surgery. Watching their little girls being wheeled into theatre, was a very hard moment.
“We decided to get comfortable in the car,” says Alyson. “We had a pager so the team could send us regular updates. It was amazing to read ‘first incision’ and ‘the girls are officially separated’. We were sitting cheering in the car park!
“The only frightening moment came when our phone rang. But it was just one of the team telling us how close they were to finishing reconstruction, and that the surgeon was making their belly buttons. It sounds crazy but that was one of the best moments for me.”
Walking into the girls’ recovery room was surreal. “Seeing them in two beds, the farthest away they’d ever been from each other, was amazing. Looking at their little bellies had me in tears.”
It was another two weeks before they could hold each girl. Alyson recalls: “Cradling them was the thing I’d been waiting for and it was incredible.”
But every day they saw how much the girls thrived apart. “Sarabeth was rolling on her stomach in the cot and it was the happiest we’d seen her. We’d been worried about the psychological impact of being apart, but they were both saying – look how resilient we are!”
Today, if it weren’t for their feeding tubes, and the thin scar that runs down each of their chests, you wouldn’t know they had ever been unwell.
“We look forward to a wonderful life for them,” Alyson says. “But will never forget the journey that got us here.”