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twin to twin transfusion syndrome
Delighted when they fell pregnant with IVF twins, teachers Kim and Stuart Coussins' joy was replaced by devastation when, after a series of complications, they were told one twin had died at 21 weeks but had to remain in the womb until the other baby was born.
Gripped with fear and sadness, Kim carried both the live and the passed baby for a further seven weeks until, after a seven-and-a-half-hour labor, her son Kit was delivered 12 weeks early on September 5 by emergency caesarean, because he was breech, weighing just 2lbs 6oz.
At the same time, Kim and Stuart, both 35, of Southend-on-Sea, Essex, England, were given hand and footprints of their baby boy who died, to remember him by.
But there was no time to grieve as, at just three days old, Kit suffered a stage three brain bleed, two heart attacks, and his little lungs almost gave up.
Kim said:
"I'd barely accepted the fact I'd lost one baby and then, when Kit was left fighting for his life, I was terrified I might lose him too."
She continued:
"At one point, I was convinced he'd die. It was a miracle that my strong little baby boy managed to pull through."
Fortunately Kit, whose parents decided not to name his tragic twin, made a full recovery, and in October, aged eight weeks and weighing 4lbs, he finally went home.
Kim, who is encouraging parents in her situation to talk to each other, so they feel less alone, said:
"It was a really strange time, emotionally, because we were still coming to terms with our grief for the baby we lost, but at the same time, we were so so overjoyed that Kit was well enough to take home."
"Speaking to other parents helped both Stuart and I beyond belief – we realized we weren't alone in our pain and that helped so much."
Kim and Stuart had been trying for a baby for three years when a pregnancy test in March 2019 finally confirmed their dream was going to become reality.
When a private seven-week scan showed they were expecting twins, and another scan at 12 weeks confirmed the babies were boys, the couple were overjoyed, only for Kim to be diagnosed with twin-to-twin transfusion syndrome (TTTS), where blood flows abnormally between the babies, at five months – soon after discovering that one baby had died.
Facing further heartache when Kit was left fighting for life soon after his birth, the couple then had the headache of a 90-minute drive from their home to Cambridge's Addenbrooke's Hospital, where he was transferred.
Luckily, The Sick Children's Trust – a charity providing families with seriously ill children in the hospital with a warm and comfortable place to stay – stepped in, letting the couple stay in their accommodation nearby.
Kim said:
"We were put up in accommodation that, with a shared kitchen and laundry area, reminded me of my university halls of residence."
She explained:
"It made all the difference in the world, to not only be able to spend precious time with Kit, but to speak to other parents – even if it was just for two minutes in the kitchen while making a cup of tea."
"It made the worst time of our lives that bit easier."
Kim and Stuart, who tied the knot in July 2015, had always wanted children and started trying for a baby in 2016, only to be diagnosed with unexplained infertility two years later.
"It became quite frustrating, because we couldn't get pregnant and we didn't know why," Kim said.
Despite qualifying for one round of IVF on the NHS, in advance of the treatment they sold their Range Rover to fund a second round, as they had convinced themselves it would not work.
But, in March 2019, they had the first NHS funded treatment at London's Portland Hospital and, to their astonishment, two weeks later produced a positive pregnancy test.
The good news doubled at the seven-week scan, which revealed they were having twins. And a 12-week scan found the twins were boys.
"I could hardly speak – I was terrified – but also I couldn't believe our luck. I'd never felt so happy," said Kim.
Sadly, the news was bittersweet because their twin boys were monochorionic diamniotic (MCDA) twins, meaning they would be identical, as they shared a single chorionic sac – the outermost fetal membrane. This meant there could be complications, including a higher risk of TTTS.
"I did the worst thing you could do and Googled it," she continued. "It came up with all these horrible complications that could happen."
Referred to Southend University Hospital, Kim was warned about the potential risks, but told she would be closely monitored and given regular scans.
But, the day before her 20-week scan in August, Kim found herself in agonizing pain.
She said:
"I started bleeding profusely and as soon as I got to the hospital the doctors basically jumped on me. It's all a bit of a blur, but it was confirmed I had Stage 4 TTTS."
"It was such an out of body experience. I was terrified but didn't really understand what was happening."
"I felt an overriding sense of guilt, because I was the only person who was supposed to be protecting my babies and something bad was happening on my watch."
Transferred to London's King's College Hospital, she had laser ablation surgery, which involves making an incision and passing an endoscope into the uterus, then sealing off the blood vessels on the surface of the placenta to stop the blood exchanging between the twins.
"The whole thing was a nightmare," she said. "It was one of the worst experiences of my life."
"After the surgery, they checked both babies' heartbeats and they were both strong."
Kim continued:
"I still wasn't reassured, though, as we knew we still had a 60 percent chance of losing one baby and a 40 percent chance of losing both."
Waiting on tenterhooks for another scan a week later, Kim was convinced she could still feel both babies kicking.
Sadly, she was mistaken, and, at the scan, she was dealt a devastating blow.
"The sonographer scanned me, then left the room," she said. "He came back in with a doctor who said, 'We're going to do everything we can to make sure your baby is okay.'"
"I just kept thinking, 'Why is he talking in singular terms? There are two of them.'"
But she was told one twin had passed away.
"There are no words to describe the emotions I was feeling," she said. "Grief just came over me, it was horrible. But the baby that had passed had to remain in the womb, which was dangerous for the surviving baby, so I was determined to do all I could to keep him alive."
At 24 weeks, Kim mistakenly believed her water had broken, but the leaking was actually the liquid that had been surrounding the baby that had passed.
"Kit was still okay and had water around him," she explained. "But as soon as your waters break, you're at an increased risk of infection, so I was told I needed to go back into hospital until I was 28 weeks."
Transferred to west London's Queen Charlotte's and Chelsea Hospital, she remained there for four weeks.
"The worst thing about it was that I didn't actually feel sick," she said. "The whole time my mind just went into overdrive wondering, 'Will my baby be okay?'"
Finally, at 28 weeks, Kim was discharged, but barely made it through her first night at home, before she needed to go back.
"I had one night in my own bed, then when I woke up, I felt horrendous – I just knew I was going into labor," she said.
After a seven-and-a-half-hour labor on September 5, Kim was delivered by emergency c-section, with his tragic brother being removed from her womb at the same time.
As soon as he was born, Kit was whisked away to an incubator, while, after a few days recovering, Kim was allowed home.
"I went home to freshen up, but soon after had a call from the hospital asking us to come in immediately. I honestly I thought Kit had died," she said.
Kit was seriously ill. His lungs had stopped working, he had suffered two heart attacks and was diagnosed with a stage three bleed on the brain.
Doctors decided to transfer him to Addenbrooke's Hospital, a level three hospital, where his parents waited, praying he would pull through.
"It was the most agonizing time of my life," said Kim. "But, thankfully, Kit pulled through and we could finally, after what seemed like forever, take him home when he was eight weeks old."
"It was such a relief I just wanted to scream and shout and tell everyone. It was just so amazing."
They have also raised £2,500 (~$3,224) for The Sick Children's Trust to say thank you for all the charity has done.
"We were just so grateful for The Sick Children's Trust for putting us up for those few weeks, so we could spend every waking moment by Kit's bedside," said Kim.
In May, Kit will be given an MRI scan to see if he has sustained any lasting damage from his traumatic start in life.
Kim added:
"We're just taking every day as it comes with Kit. We still enjoy the novelty of the little things like being able to dress him or put him in his car seat."
She continued:
"I'm pretty sure we've been through the worst and our family can get through anything now."
"But we've learnt how important it is to talk about what you're going through and I'd encourage all parents who are going through anything, no matter how big or small, to do the same."
Click here find out more about The Sick Children's Trust.