“Oh your twins are so cute” is an off-the-cuff comment by well-meaning strangers that still fills Tracey Kirby with sadness.
As a mother of three-year-olds Henry and James, she has no problem with agreeing her sons are adorable, but she knows there is one little boy missing. Henry and James are triplets.
The missing boy is Cayden.
His name means “little fighter” and that’s exactly what he did until he passed away in the womb.
He suffered what doctors believe was a cardiac arrest – his little heart giving up after fighting too hard for too long.
“There is a saying in our community that it doesn’t get easier, you just get better at dealing with it,” says Tracey. “But it still hits me when people call the boys twins – they’ll always be triplets. People think they’re being kind when they say ‘oh, but you still have two’, but there isn’t a day goes by where we don’t think about Cayden.”
Tracey and Paul, 30, who live in Bedfordshire, were told they were expecting triplets – identical twins and a singleton – at a scan at their local hospital in 2014. Although there was mention of some complications with identical twins, they decided to remain positive and started preparing for the arrival of three little ones.
But at 19 weeks, the couple were told the twins had TTTS (twin to twin transfusion syndrome). The condition affects the flow of blood from the placenta to each baby, meaning the recipient twin receives too much blood and has a large amount of amniotic fluid surrounding them, while the donor twin receives too little blood and has a noticeable reduction in amniotic fluid – putting both babies at risk.
“The idea of selective reduction was discussed, but it just wasn’t something I was willing to do,” says Tracey, 34. “I just thought ‘I’m going to do the best I can for the three of them’. If we went for the selective reduction, there was still a chance I could have a miscarriage so to us it wasn’t an option.”
At around 18 weeks the couple found out all the babies were boys and were known back then simply as the singleton, twin 2 and twin 3. Twin 2, who was eventually named Cayden, had a bit of fluid around him but at this point doctors merely wanted to keep an eye on him. Just a few days later, at 19 weeks, the situation had rapidly deteriorated.
“We were told they’d become Stage 3 TTTS. There are five stages so this was quite a sudden change,” says Tracey. “We were offered the selective reduction of twin 3, because he was the smaller, recipient twin, but we just couldn’t do it. The doctors were all really understanding.
“At 20-22 weeks the TTTS had stabilised but they couldn’t perform a laser ablation because the babies were in front of the placenta.”
A laser ablation is a common form of treatment in the more advanced stages of TTTS. The procedure involves putting a needle and camera into the womb and using a laser to seal off the connecting blood vessels in the shared placenta. It helps to correct the imbalance of blood flow in TTTS babies but, as with any surgery, comes with its own risks.
“At 23 weeks Cayden, twin 2, had lots of fluid around him and Henry, twin 3, had nothing at all,” says Tracey. “We had lots of specialists coming to examine me and a heart doctor told me all their hearts were doing well. In my mind that was enough – their hearts were healthy so they were all still fighting.”
Eventually, the placenta had moved in such a way, laser ablation could be performed as the babies wouldn’t get in the way of the needle. When the camera went into Tracey’s womb, she saw live video footage of her three babies for the first time – a rare insight most mothers don’t get to experience.
She said: “You see them properly on the screen, it’s amazing. I’ll never forget seeing Cayden when he was alive. His skin was really red from all the blood while Henry was quite pale, so we could make out who was who quite easily. I remember Paul looking at the screen and saying how amazing it was to see them so close – you could see their little finger nails and they both had blond hair.”
What followed next was an agonising wait of two weeks. Tracey and Paul were told a fortnight was the amount of time needed to see if the laser ablation had worked properly – if all three babies survived those two weeks, the chances would be good for the rest of the pregnancy.
“Those whole two weeks I just couldn’t relax,” says Tracey. “But I knew I just had to get through them and then it would all be fine.
“The next week I had an appointment with a local midwife and she had a listen to the heartbeats – I couldn’t believe it when she said she’d heard all three.
“I was so happy and excited – all the boys were alive and it was just amazing. For the first time in my pregnancy I could actually relax and I really enjoyed myself. Later that day we had our appointment in London, but because we knew it was going to be fine, we went out for lunch before and instead of our usual anxiety we were happy.
“But then our consultant listened to the heartbeats and found James’ and Henry’s. I made a joke about Cayden being cheeky and hiding. The consultant then wiped the jelly off my belly and I thought ‘oh, he must have put too much jelly on, that must be it’. Then he put his hand on mine and said ‘I’m so sorry, he’s gone’.
“At first I just couldn’t understand, we’d heard him that morning. But he said Cayden had died the day before. It was just such a complete shock. I’d been on such a massive high going into the appointment, I couldn’t believe it. They said he’d probably had a cardiac arrest with all that extra blood pumping into his body.
“The local midwife was so apologetic afterwards but I told her she’d actually made things better – for those few hours between appointments, I had a little part of my pregnancy where I really enjoyed it and I was happy.”
“I knew he was in there and with his brothers and I just wanted to keep things that way,” said Tracey. “I saw a bereavement specialist and we started discussing the funeral. I thought about the birth and I knew the survivors would be whisked off to neonatal straight away, so I knew I wanted to have my cuddles with Cayden.
“Those seven weeks I had him in my tummy and I treasured that. I knew once they were born he would be gone. I liked that he was in me and he was safe. For the rest of my pregnancy I could talk to all three of them and I was happy they were all together.”
At 32 weeks, on 4th August 2014, Tracey’s waters broke and she was rushed into hospital for her c-section. James, the singleton baby, weighed 3lb 6oz, and Henry, twin 3, was 1lb 8oz.
“We named him Cayden because it means ‘little fighter’ in Celtic,” explained Tracey. “He carried on fighting until his little heart gave up.”
A funeral for Cayden was held in a Catholic church near Tracey and Paul’s home. He was then laid to rest in another churchyard close by. They still visit him, especially on birthdays and Christmas, and James and Henry know they have a little brother who is no longer here.
“It’s hard, especially on birthdays and special occasions, because I do always wonder what it would be like if Cayden was here with us,” says Tracey. “Obviously Henry is his identical twin, so I know what he would have looked like too, which makes things hard. I wonder whether the boys feel something missing – you hear of that multiple bond starting in the womb so it would make sense if they had that feeling of loss.”
After receiving support from Twins Trust’s Bereavement Support Group, Tracey is now a befriender – talking to other multiple birth parents who have suffered the loss of one or more children. Her story is one of many shared in our booklet, which is available for parents and health professionals to order.
“The booklet will be a real help to people,” says Tracey. “When you first go through something like this you feel so alone, that’s how I felt. When I found out about the support and Twins Trust’s Bereavement Support Group I found it so helpful. It’s a comfort, but also sad of course, that you’re not the only one.”
Thank you to the Big Lottery Fund for funding our Bereavement Support Booklet.