“I wear Theo’s heart on my sleeve – defects and all”
RUNNING around the garden, stopping only briefly to watch Peppa Pig before tearing off again, Theo Stevenson looks like any other toddler until his dad lifts up his t-shirt to reveal the nine-inch scar running down his little chest.
Born with a congenital heart defect – called tetralogy of fallot – the two-year-old has already had four major operations at The Freeman hospital in Newcastle and may still need a heart valve replacement in future.
The second open heart surgery should have been straightforward but, when Theo knocked out a chest drain, he suffered a cardiac arrest. And the third was scheduled for two days before Christmas but was eventually postponed until February 10 this year.
However, instead of looking pink and healthy afterwards as his parents Sarah and Andy from Guisborough had been told to expect, their baby still looked gravely ill due to an internal bleed and was rushed straight back into theatre.
Now, as well as coping with his rare, complex heart disorder – which changes the flow of blood – there are added complications of asthma and a possible blood-clotting disorder.
Sarah wanted to get a tattoo to celebrate Theo’s birth but, instead of his name, she had his heart complete with its unique defects inked onto her left arm and later had his heart rhythm, or ecg trace, added after his hospital stay earlier this year.
“When I was pregnant I was told we should have a termination at the 20 week scan but Theo has always been really well,” said Sarah who is about to start an access to health course with the aim of becoming a paediatric nurse.
“He is very happy, he loves dancing, the film Frozen, and is the nosiest baby in intensive care – he has to have his bed propped up so he can see what’s going on.
“They have his heart under control but there are other problems now – it’s one thing after another.”
Sarah, 30, sought advice from online support networks but as there were were rarely posts from dads, she decided to set up a Facebook group, Teesside Heart Parents and Patients, so Andy could meet other fathers going through the same ordeal.
While Theo was intensive care for six days after his last operations, his mum slept in a bed next to his while Andy, 31, a photographer, stayed in the Freeman hospital’s ‘home from home’ accommodation in Newcastle.
Scott House contains 18 en-suite bedrooms and a self-contained flat that can be used by parents of children receiving treatment on the nearby Children’s Heart Unit.
The couple is so grateful for the care they’ve received that they, along with generous family and friends, raised £6,900 last year, including a £3,000 donation from construction group Balfour Beatty, which will go to the Freeman Hospital’s Children’s Heart Unit Fund, CHUF, and The Sick Children’s Trust which paid for Scott House.
Sarah and Andy plunged into the icy North Sea at the Redcar Boxing Day Dip, Theo took part in a sponsored toddle and his dad is going to swim the Channel to raise even more money.
“Last year when he went away for a long weekend we ended up in hospital and at Christmas we didn’t put up any decorations because he was due to have his surgery,” Sarah added.
“When went away this year we didn’t worry that Theo was going to turn blue as he’s got through this big operation. It’s a relief to be able to enjoy life a bit more now.”
Facebook: Teesside Heart Parents and Patients
The Freeman Hospital’s Children’s Heart Unit Fund (CHUF) website: http://chuf.org.uk
The Sick Children’s Trust website: http://www.sickchildrenstrust.org Twitter @TheSCT