Joined from chest to pelvis at birth, twins are thriving after 18 hours of surgery to separate them

Annie and Issie Bateson like to be close to each other, as you would expect from identical twins.

‘They have all this space to play in,’ says their mum Hannah, gesturing around her airy living room. ‘But it’s like there’s some sort of magnet pulling them together.’

Of course, that’s not to say they don’t have their moments. ‘Don’t get me wrong, they’re typical sisters,’ she laughs. ‘One minute they are waving and clapping their hands at each other, the next they’re fighting and bickering.’

In fact, Annie and Issie are very far from typical. When they came into the world in March last year they were joined from the chest to the pelvis. Now, 14 months later, they are among the few conjoined twins to have successfully undergone gruelling separation surgery.

While scientific advances have resulted in remarkable developments when it comes to treating the medical complications of our tiniest citizens — just last week, it was revealed that the first baby had been born in the UK with the DNA material of three ‘parents’ to prevent an inherited genetic disorder — the procedure the girls went through is still highly risky.

‘Few’ probably doesn’t quite sum up how rare these little girls are. Just look at the statistics: worldwide, conjoined twins occur in one in 60 million to one in 190 million pregnancies, and of those, only 7.5 per cent survive. When they make it to surgery, a heart-breaking 40 per cent, don’t survive.

So it’s little wonder that Hannah, 32, and her 33-year-old husband, Dan, prefer a less scientific term to describe their twin daughters. ‘They’re miracles really,’ says Hannah.

At the family home in Toomebridge, County Antrim, it’s clear these little girls are forces of nature.

While surgery to separate them has left them with one leg each, both are extraordinarily adept at bottom shuffling their way across the floor of the family home. Then there are their evolving personalities. ‘Issie’s found her voice, she’s babbling — a real chatterbox, while Annie is more of a silent rascal,’ says Hannah.

‘She’s the adventurer who will just disappear silently behind the television or sofa.’

She shakes her head, her delight palpable. And little wonder, for the last few months have been emotionally gruelling and came on the back of years of the heartache of infertility.

‘There are lots of unknowns ahead, but for now we’re still riding the high of them being alive, surviving birth and surgery,’ says Hannah.

Former teenage sweethearts, the couple started trying for a baby after their 2016 wedding. After two years without success they were referred to a fertility centre in Belfast, where Hannah — an NHS senior support worker who then weighed 20st — was told she would have to lose weight before the couple could receive any medical intervention.

When they came into the world in March last year they were joined from the chest to the pelvis

She managed to lose 11st in a year after undergoing a mini gastric bypass. The couple were told to wait another six months before they could be issued with the fertility drug Clomid. Happily, Hannah became pregnant on the first cycle in summer 2021, and the couple discovered at the subsequent 12-week scan that they were expecting twins.

Except . . . something was wrong.

‘We could tell from the sonographer’s manner that she was concerned,’ says Dan. ‘Then she told us she believed the babies might be MCMA twins.’

MCMA (monochorionic monoamniotic) refers to a rare type of identical twins who share not only the same placenta but the same amniotic sac. They carry a higher risk of complications, from miscarriage and foetal abnormalities to stillbirth.

Terrified, the couple were immediately referred to a specialist consultant. ‘It was incredibly frightening,’ recalls Hannah. ‘I remember the way I described it to our family was MCMA are the highest risk twins and the rarest — and the only thing rarer would be conjoined twins.’

Just a few days later, another scan, at the Royal Victoria Hospital in Belfast, confirmed that their twins were this even rarer phenomenon.

‘I don’t even know if we really processed the information,’ Hannah recalls. ‘I had done all this research for MCMA twins, which was a big enough thing — then we learn they’re conjoined and there was so little information. I found that tough.’

At this stage all the couple were told was that the babies were joined from the chest to the pelvis and that, crucially, their hearts were separate. Happily, there was no sign of any other genetic abnormality.

‘The key things that make separation possible or not is separate and healthy hearts,’ says Hannah. ‘At every scan we were desperate to see those two hearts beating, but at the same time, it was terrifying to see how close they were.’

It was two-and-a-half months after separation before doctors pronounced Annie and Issie strong enough to travel, and the family of four were able to return home in early December in time for Christmas

The girls were fused at the liver, but since this organ has a unique ability to regenerate, it could be divided.

Their next appointment was at University College Hospital London (UCH), in October, when the couple were given the option of terminating the pregnancy.

‘It was never even a conversation for us,’ says Dan. ‘It was also made clear that if we were committed to the pregnancy, we would be fully supported — and we were. We’re so incredibly grateful for everyone who cared for the girls.’

At the same appointment, the couple were told that Hannah would need to move to London in January — at around the 26 weeks mark — in order to be close to the hospital and its specialist teams.

‘I had a caesarean section scheduled for around 35 weeks, but if I went into early labour, it was very unlikely that the girls would survive without immediate intervention,’ Hannah says. ‘We had just moved house at this point, so there was a degree of panic, and we were also worrying about money.’

With the assistance of a politician in their area, the couple were given funding for a self-catering flat about five minutes’ walk from specialist children’s hospital Great Ormond Street (GOSH), to which the babies would be immediately transferred following their birth.

March 8, 2002, the scheduled day of the surgery arrived without incident. UCH had run repeated drills in preparation for the seismic event, with two separate teams of nurses assigned to each baby.

‘They asked us to pick colours for each girl and for all the equipment, and the staff were then colour co-ordinated. Annie was pink, Issie was yellow, so each side of the cots were taped and stickered for who was who, as well as each machine, and all the nurses, too,’ says Dan.

The couple had also been given a tour of the intensive care neo-natal unit (NICU) at GOSH.

‘I’ll never forget that feeling of walking in and seeing all those tiny babies and equipment,’ says Hannah. ‘We both started crying. I think it brought home everything we were going to face.’

‘But we were lucky,’ adds Dan. ‘There are many families who end up with a child in intensive care who didn’t expect it. We at least were in the position of knowing, so we could prepare for it.’

Nonetheless, Hannah was ‘terrified’ when she was taken into the operating theatre — and neither they, nor the medical team, knew exactly what to expect when the babies were finally delivered by caesarean section at 9.51am.

‘I remember how tense it was in the room,’ recalls Dan. ‘Then there were loud screams, and you could feel this giant sigh of relief. No one had been sure the girls would be born breathing, and here they were screaming.’

The babies were quickly whisked off to a side room to be assessed and stabilised. ‘One of the doctors came back and said they had had to stop Annie trying to pull all her tubes out,’ Hannah laughs. ‘Nobody expected them to be well enough for it to be that difficult.’

The birth was not without trauma however: Hannah had lost a lot of blood and needed to be stabilised, meaning she had to remain in recovery while the girls were transferred to Great Ormond Street, their anxious father travelling in the ambulance with them.

Hannah had to wait another 24 hours before she could set eyes on her daughters.

‘Obviously, it was hard, but I’d prepared myself for that,’ she says. ‘At that point they were alive, and they were doing better than anyone had expected — that was all I needed to know,’ she says.

Her first cuddle, when it came the following evening, in GOSH’s intensive care unit , was ‘magical’.

‘It was a bit of a logistical nightmare, because there were tubes and wires everywhere, but being able to finally hold them — it was indescribable,’ she says.

In fact, the girls were doing so well they were able to leave the NICU after four days, while the family could return home just over three weeks later.

At that point, separation surgery had already been scheduled for the following month, but when the girls got mild Covid it was postponed to July.

‘It was never a consideration for us not to separate them,’ says Dan. ‘They had separate hearts, they could be separated, so for us it was the only choice.’

Yet that surgery was, in turn, postponed, meaning the anxious new parents faced a further wait.

‘To have that date hanging over your head, and then for it to be moved was hard,’ says Hannah. ‘You’re living in limbo.’

The twins’ surgery was finally rescheduled for September 19 — subsequently announced as the day of the Queen’s funeral, meaning yet more uncertainty.

When the morning of the surgery dawned, the couple concentrated on the positives. ‘We weren’t focused on the girls not surviving,’ says Hannah. ‘We just believed that we had them and we weren’t going to lose them now.’

The girls were taken into surgery at 9am, the start of a marathon 18-hour procedure as their anxious parents paced the corridors outside. ‘It was the longest day,’ says Dan. ‘The medical team updated us throughout the procedure as much as they could, but the waiting was horrendous.’

Finally, surgeons emerged in the small hours of the next day to say the separation had been successful — although further drama was to follow. ‘The next day, Annie had a bleed, so she went straight back to theatre,’ says Hannah.

It was the start of seemingly endless further interventions.

‘Over the next two-and-a-half months, they had 30 procedures including 20 operations,’ she continues. ‘When the girls were separated they were given silos [an external pouch to contain some of their internal organs], so they had to go back and forth to theatre for their abdomens to be progressively closed. There were also other complications.

‘There were times I was running to the anaesthetist’s room with one child and, as they were going into recovery, I was going down with the other. We had been prepared for the aftermath of the separation to be tough, but it was worse than we ever thought it would be.’

Dan and Hannah say that the anxiety of worrying about their daughters meant it took time for them to register that they were now separate entities.

‘There was one day, maybe a week after the surgery, when they were crying, and I was running from one side of the cubicle to the other, and that was the first moment of ‘Oh, my goodness, they’re separate’,’ Hannah recalls. ‘That realisation took a while.’

It was two-and-a-half months before doctors pronounced Annie and Issie strong enough to travel, and the family of four were able to return home in early December in time for Christmas.

Each month since has brought the ever-evolving changes of growing babies as the duo learn to play, interact and move. In the next few months, they will each be fitted with a brace which will give them a prosthetic leg to help stabilise their growing bodies.

‘We thought prosthetics were years down the line, but they’re very keen to get that ball rolling,’ explains Dan. ‘They will help them sit unaided, although whether they use them long-term we don’t know. Some formerly conjoined twins prefer to use crutches; others use wheelchairs.’ Beyond that, the couple have to wait and see.

‘There will be more surgeries over the years — wee things we’ll have to tweak that will be different for both girls,’ as Hannah puts it. ‘But we’ll both just take it as it comes.’

With Hannah no longer able to work because of the girls’ complex care needs and the extensive travel to and from London, they have launched a fundraising page to help with costs they face along the journey.

In the meantime, however, they are enjoying every day with their ‘two little rascals’.

‘We’re really going to have our work cut out for us,’ Hannah adds. ‘They are definitely characters. They’re very determined — but that determination has got them where they are now.’

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