Kian’s story

Baby Kian was born at Singleton Hospital after a healthy, straightforward pregnancy. But very soon after his arrival, things took a dramatic and frightening turn for new parents Becky and Sean.

Becky remembers the fear she felt when she first noticed that something was wrong. She said: “We noticed straight away that Kian’s arm was quite floppy but then eleven hours later, the team started to get concerned about his breathing. Kian was put on high flow to help him maintain his oxygen levels but after a week, he still couldn’t be weaned off.”

During delivery, Kian had experienced a birth injury which caused Erb’s palsy – damage to the network of nerves in the neck that control movement and sensation in the arms. Kian also had phrenic palsy, where the nerve responsible for moving the diaphragm becomes damaged. As a result, Kian’s diaphragm was paralysed and he was struggling to breathe on his own.

The team at Singleton consulted with the respiratory team at the Noah’s Ark Children’s Hospital for Wales, and together they agreed to wait in hope that the damage might heal. But after six weeks with no improvement, Kian was transferred to Noah’s Ark for further investigation.

At the children’s hospital, Kian had an NJ tube inserted to bypass his stomach, taking pressure off his lungs to helped them expand more easily. But the procedure wasn’t effectively enough, meaning that the only remaining option was an operation to stitch down Kian’s diaphragm to give his lungs space.

Becky remembers every second of that day: “It was the longest, most traumatic three and a half hours of my life. Even though it was keyhole surgery, which is less invasive, it was still terrifying.”

After the operation, Kian spent 24 hours in high dependency before returning to Island Ward. A week later, he was finally strong enough to be weaned off high flow.

Becky said: “It’s not what you expect in the first few weeks when you’ve had a new baby. Instead of the baby bubble we’d been looking forward to, I was alone in hospital while Sean had to keep working back home, more than an hour away.”

During those long, isolating weeks, Becky received support from ward counsellor, Shareefa, who is part of the charity’s emotional support service.

Becky said: “It was so good to have someone to talk to. I met Shareefa before the op, after the nurses referred me. She was so understanding and made me feel comfortable straight away. It didn’t feel like she was a stranger. With Sean back in work, she would just call in and check on me.”

One of Becky’s favourite memories is a small act of kindness that meant everything at the time. “It was boiling hot day  and we’d gone to buy lollipops, but they were all sold out. Shareefa found some for us and brought them in. She was so comforting and thoughtful. Being able to talk to someone who wasn’t medical, someone who felt just like a friend, meant everything. It was so nice to have a normal chat, not words you didn’t understand.”

Kian is now home and Becky and Sean are finally able to live the family life they’d been dreaming of.  Becky said: “ Kian’s only on high flow at night now, just for lung hygiene. He’s doing so, so well and has come on loads. It’s so nice to go to baby classes and just sit and cuddle him on the sofa, something you really appreciate when you’ve spend the first few months of your baby’s life in hospital.”

The Noah’s Ark Charity emotional support service is funded through donations made by people like you to our Here for You Appeal. Thank you for helping us to help families through the most difficult of times.