Words by Smiley Team
When Ellie Tyerman was 20 weeks pregnant, she and her husband Robin received the devastating news that their unborn son had a heart condition.
They went to the scan full of excitement, looking forward to hearing their baby's heartbeat. But after a few appointments and referral to the children’s heart specialists at Leicester Royal Infirmary, their son Albie was diagnosed with TGA (Transposition of the Great Arteries). The condition is one where the two main blood vessels leaving the heart – the pulmonary artery and the aorta – are swapped over.
“The feeling we felt during this process are indescribable,” says Ellie, 31, who lives in Derbyshire. “You never really hear about any 20-week scan having a bad outcome, so we were in shock with huge amounts of sadness and uncertainty.
“We couldn’t believe there was something wrong with our baby."
The Heart clinic at Leicester Royal were hugely supportive to Ellie and Robin. They gave them all the facts about the condition and what would happen after pregnancy. Despite it being hard to enjoy this time, the specialists made the couple feel informed and safe.
A few days after he was born, Albie successfully went through open surgery, which lasted more than seven hours – and he's now a lively, 11-month-old boy.
Ellie and Robin couldn’t help but think they wanted to give back to the amazing team of doctors and nurses that saved their baby’s life.
So, they created Steps for Beats: a running fundraising challenge to see how many miles they can jointly accumulate during the same time as Albie's heart surgery: 7 hours and 25 minutes. It’ll take place on Albie’s first birthday.
The fundraising challenge will raise money for Heart Link, a charity founded in 1981 as a support organisation for parents and families who had a child with a heart condition. “It was my husband Robin that came up with the idea for the run,” says Ellie.
“Robin is running the length of the surgery to try and say thank you to the all who helped Albie on the day of his surgery, as well as the 19 days that he was in hospital for. He will also be joined by anyone that would like to support our cause.
"Many of Albie’s honorary aunties and uncles will also be running with robin on the day and make their own ‘steps for beats’.”
The charity is hugely important to the couple. "It not only saved Albie’s life, but the support Robin and I received as new parents going through this trauma was remarkable,” says Ellie.
“From the support through the diagnosis, to the warmth and care the staff gave us in the NICU and on the ward was truly heartwarming. Albie was their job, their priority, but each member of staff gave Robin and I the emotional support to get us through the hardest weeks of our lives.
“We want to raise awareness of the incredible staff and makes sure they have the resources to support other families that have to go through similar situations.”
“Albie is nearly one and the light of our lives,” says Ellie. “He is a happy, bouncy, and very adventurous little boy. He is crawling, standing, and doing everything a boy his age should do.
“For such a hard start in life, you only realise what he has been through when you see his scar. His scar runs from under his chin to just above his belly button and is faint in colour now. I think he will enjoy showing it off to his friends at school when he tells them he was attacked by a shark.
“Albie and the experience Robin and I have been through has changed our lives for the better.”
DONATE: You can donate to Ellie and Robin’s JustGiving page to help them raise money for Heart Link.
FIND OUT MORE: Learn more about Heart Link and how else you can offer support to the charity.