Joanne and Kjell Olsen’s son Thorben was born with a serious heart defect. Now a fully healthy four month old baby, Joanne describes what it was like finding out how her son would die if he didn’t have major heart surgery, and how her medical research led her to safe guarding his future with umbilical cord blood banking
Thorben Olsen is just like any other five month old baby – gorgeous, squidgy and adorable – with his devoted mum Joanne, dad Kjell and older sisters Teagan and Thea plying him with love and attention during these tough weeks of lock down.
It’s hard to believe that he’s had major open heart surgery, and was first operated on just two hours after he was born by C-section on December 11.
Now he’s a healthy baby, with barely a scar as a reminder of the ordeal he has been through.
At 20 weeks gestation Thorben was diagnosed with transposition of the great arteries (TGA). TGA is a serious but rare heart defect present at birth (congenital), in which the two main arteries leaving the heart are reversed (transposed).
It changes the way blood circulates through the body, leaving a lack of oxygen in blood flowing from the heart to the rest of the body. Without an adequate supply of oxygen-rich blood, the body can’t function properly and the baby faces serious complications or death without treatment.
It was a huge shock to Joanne and her family but to try and calm herself she set about researching the condition, spending hours on the internet reading in-depth medical papers so that she was prepared for every outcome.
At the same time she came across cord blood banking, more by fate than intention.
Joanne explains: “I was admitted at 20 weeks with suspected thrombosis. The next day our baby was due his 20 week scan, and that’s when we found out we were having a boy with a heart problem.
“I was a wreck, although you try and stay positive through everything. My husband and I have been together for 20 years and we’ve talked about children throughout that time.
“When we talked about a family I always pictured myself with boys and I’d waited 20 years for this boy. At 20 weeks I found out I was having a boy and less than 5 minutes later that he had a heart defect. With that came the prospect of losing him.
“I was googling like crazy anything I could find on TGA, looking for medical journals and practice papers. I calmed myself when I saw the outcome for TGA surgery was good, and then something popped up on Sky News about a study on the potential regeneration of heart tissue using stem cells.”
Armed with this knowledge Joanne set about learning more about the umbilical cord blood banking services available in the UK, and chose Biovault Family.
Joanne said: “The website is so open with all the information you need there and you don’t feel pressured into having a conversation.
“Nikki Driver looked after me and she was wonderful. She offered us a military discount and whenever she called she’d chat to me and was so genuine, letting me cry with her and laugh with her.
“She had time for us and was dedicated and she’d just pick up the phone to see how we were doing. There was never any pressure.
“I want to make sure my son’s blood and cord tissue are in the best place. I want someone who is as invested in my son as I am and that’s why I chose Biovault Family.”
“People forget that these illnesses and problems can occur later in life and once the cord is cut, you won’t get the stems cells and cord blood. You can only use marrow which is more trauma to a child who may already be suffering with illness such as cancer.
“You never know what is coming and I know I would sooner spend money on storage and harvest than anything else.”
The rest of Joanne’s pregnancy passed without incident, and Joanne and Kjell made their way to Southampton Hospital, the primary paediatric cardiac specialists in their area two hours away from home. – Joanne’s parents moved in to look after the girls who stayed in Oxfordshire – on their initial due date of December 10, knowing they might be there for anything from two to six weeks.
However, Joanne’s surgery was postponed as no neonatal intensive care beds were available and Thorben was delivered the next day.
Joanne said: “Dawn Mackenzie, the phlebotomist, was amazing, She arrived on December 10 at 6 in the morning, staying till midday when the surgery was postponed. She returned the next day and stayed until after Thorben was born, saying goodbye in the post op recovery room. She was fabulous in the surgery and kept me informed of the process, showing me the cord and the blood. She was amazing and very reassuring.
“Thorben was born blue because his body was lacking oxygen. His oxygen saturation at first was 75%, but that’s because while he was inside me he was perfectly safe as my placenta was providing him with everything. But once they cut the umbilical cord he was on his own and within an hour of him being born his oxygen was down to 20%. At just two hours old, he had to have a balloon septostomy.”
Thorben had open heart surgery at a week old on December 18 with further complications addressed successfully by his two doctors. One week later he was discharged on Christmas day.
“He’s been absolutely fine. We’ve had two cardiac appointments at one and three months old, and there’s not even a heart murmur and everything is going really well,” said Joanne.
“We’ve been in isolation because my son is registered on the vulnerable list. I took the stance that because he wasn’t healed I wasn’t going to risk any outside infection so I asked people to stay away for the first six weeks he was home. I think I’ve been out five times, as we then went into lock down.
Luckily our garden is quite big!”
There’s a long list of people to thank, including the doctors who first identified the problem and those who operated on him, the RAF who gave Kjell 12 weeks leave so that he can safely isolate with his family, their parents and the local Covid support group.
Joanne said: “Everyone has been so understanding and we’ve had a very positive experience throughout it all, and Thorben is a strong and healthy baby.”
Joanne and her family are now raising money and awareness for the charity Tiny Tickers which improves the early detection and care of babies with serious heart conditions.