After my daughter’s third heart operation I broke down in tears because it was the first time I had ever seen her lips, fingers and cheeks pink – they were always blue before.
My name is Shane and my daughter Olivia is 11 years old with only half a working heart.
After 10 years of trying for a baby and on the second attempt of IVF (In vitro fertilisation) I finally heard the words I’d been longing for: “Congratulations! You’re going to be a dad!”
Then on 27th February 2004 my beautiful daughter Olivia Maya Rhodes was born after 27 hours of labour. I just couldn’t take my eyes off her and wouldn’t leave her cot side. Eventually I did leave Olivia so I could go home and hang all the banners in readiness for her homecoming.
I wasn’t home long when the phone rang and it was the hospital asking me to return to the hospital immediately as Olivia wasn’t well so I jumped in my car and raced back, all the time things running through my head. When I got to the hospital Olivia was in an incubator and fighting for breath so much her back was arching from her mattress. It was a site that broke my heart. At first doctors said she had a chest infection, but then came the devastating news that something was wrong with her heart.
Olivia was diagnosed with a rare heart condition called Hypoplastic Left Heart Syndrome, also known as half a working heart. We were given two options: to take our baby home so that she could die peacefully in her sleep, or let her have an operation which had a 60 percent chance of survival. My whole world just fell apart. I decided that she deserved the chance of life and I said: “Please get her to where she needs to be.”
I was advised to have her christened immediately as they didn’t know if she would make it. At first I was hesitant as I felt I was giving up on her, but then I decided to go ahead with it as I felt she needed all the help she could get.
Olivia was rushed to Birmingham Children’s Hospital and on arrival I was given all sorts of information that I just could not take in. I wanted it to be over and for Olivia to be ok. A cardiac liaison nurse took me aside and said: “Don’t worry. You’ll soon be walking Olivia around the supermarket on a trolley and she’ll be a spoilt little princess.”
Olivia had an open heart operation at five days old. She was in theatre for 12 hours and had to be bypassed three times, she eventually came round on intensive care. Her little eyes were blinking and opening and I remember singing “My girl” to her. I finally got to take Olivia home six weeks after but she shortly returned back to hospital following some complications. Olivia had a second heart operation at six months old and did tremendously well. She looked like a different child as she wasn’t as blue and had loads of smiles and giggles.
From then on Olivia thrived and didn’t have her Fontan Procedure until she was 10 years old, on 14th September 2014. This operation was again carried out at Birmingham Children’s Hospital. I remember seeing Olivia in intensive care after she left theatre and I just broke down in tears because it was the first time I had ever seen her lips, fingers and cheeks pink – they were always quite blue. And even with all the machines and wires underneath her oxygen mask, she managed a grin and said: “I love you daddy.”
Olivia’s my world and is such a brave young lady. She is now looking forward to a beautiful adventurous future and ready to take on any challenges life gives her along the way, with her dad always by her side. Olivia is my inspiration and an inspiration to all the heart warriors out there as she proves that you can live a full and happy life.
My advice to any parent who has a child with a congenital heart defect is to never give up hope. It’s a long and rocky road but you’ll have a beautiful heart warrior who will give you love and happiness. I would be lost without my girl. She’s my heart, body and soul and Olivia and I are really looking forward to the future.