Ten years from now, I hope the shortage of organ donors will be a distant memory.
I remember the day that I was told my son, Frankie, was in complete heart failure and needed a new heart. Lots has happened since then, but that memory is one I’ll never forget. The chances of Frankie receiving a donor heart were slim. Not only because Frankie was small and underweight but because not many people, understandably, choose to donate their child’s organs once they’ve passed away.
For 21 months we waited and over that time, Frankie became so exhausted that he couldn’t even pick up his toys. The wait hung over us. It was a constant in our lives. For the first few months, every day I was hopeful that the phone would ring to tell me that there was a heart for him, but it didn’t. As the months went by, I no longer expected that call.
For a lot of this time, Frankie was able to remain at home until he was put on the urgent transplant list which is when we were admitted to Newcastle’s Freeman Hospital. Hospital life was not unfamiliar to us. Hospital was a big part of our life since the day Frankie was born and at a minute old underwent heart surgery. It wasn’t until four and a half months later until I could first bring my son home.
“I had been sleeping in a plastic chair up until this point at the side of Frankie’s bed. Andrew, who was the House Manager then, showed me around the rooms and it was amazing. I couldn’t wait to make homecooked food in the kitchen after living off pot noodles for the previous two months. It was as close to home as it could be.”
During this time though we were welcomed into Scott House run by The Sick Children’s Trust. Scott House had just opened then in the October of 2014. I remember walking in the front door and thinking it was amazing. I had been sleeping in a plastic chair up until this point at the side of Frankie’s bed. Andrew, who was the House Manager then, showed me around the rooms and it was amazing. The beds had never been slept in and looked so comfortable. I couldn’t wait to make homecooked food in the kitchen after living off pot noodles for the previous two months.
It was as close to home as it could be, coupled with the staff, Chris and Andrew, who were always on hand to talk and provide a friendly ear to listen.
By the time we were back in hospital waiting for a heart, I could sleep on the ward with Frankie. We waited for two months on the urgent transplant list for a heart and what helped me get through this was access to Scott House. I didn’t stay there, but I used the laundry facilities and could also cook meals. I made friends at the hospital, many who were staying at Scott House so when the kids were asleep it was a place we could go and talk away from the hospital.
When I was told that there was a heart for Frankie it was 05:45. I was terrified. People say I’m negative but I’m not. Throughout all of Frankie’s treatment I’ve just remained realistic. I knew that if this didn’t work then nothing would. Mixed in with the fear was this horrendous feeling of guilt. Knowing what had happened for us to get a heart made me incredibly sad for the family who had lost their little one.
Heart wise, Frankie recovered well post-transplant but sadly the anti-rejection medication affected his kidneys to the point that he needed another operation, this time a kidney transplant.
This was the next loop on the rollercoaster that we had to ride.
As Frankie had already undergone one transplant, he had to wait a year until he could be listed for another one. For the first four weeks he was on dialysis for 24 hours a day and for the last 27 months we’ve been going to Newcastle’s Royal Victoria Infirmary (RVI) for dialysis three times a week. That was up until a few months ago when Frankie received a kidney from his dad, Chris.
“It was a massive help to know that there was someone who knew us and was there to lend a hand. Crawford House, just like Scott, was so close to the hospital and it looked and felt like Scott House, so we felt we were ‘Home from Home’ again.”
Chris and I both underwent testing to see if we were a suitable match. Finding out I wasn’t was possibly the hardest time for me. Finally, I thought, I could do something to physically help my son rather than just stand there and wait for someone else to come along and help. But of course, this is Frankie Lord and nothing is straight forward! It turned out that some of my tissue was a match with the tissue in Frankie’s new heart – something very, very rare. Fortunately, though, his dad was a match but had to lose four stone before the transplant could take place.
Frankie is older now and we’ve always been very open about his heart. He knows that there is a little boy or girl living in the sky who gave him his heart and every year on his anniversary he wants to set balloons off. Knowing he was going to have a kidney transplant; Frankie became very emotional because he thought his dad was going to go and live in the sky. Not only that, he now has a little brother who turns two this year and every day he would cry for him. He missed him so much and it made hospital harder this time round.
We received help from The Sick Children’s Trust again as they run a ‘Home from Home’ at the RVI called Crawford House. It was a great comfort to see Andrew was managing the house as he’d been on our journey with us. It was a massive help to know that there was someone who knew us and was there to lend a hand. Crawford House, just like Scott, was so close to the hospital and it looked and felt like Scott House, so we felt we were ‘Home from Home’ again.
Over the years I’ve been told too many times that Frankie wasn’t going to make it but I’m crossing my fingers that we’ve done the hard part now and we can start to do more things as a family. Summer still seems a little far off, but my family are already looking forward it. It’ll be the first time Frankie will be able to do the things that every child his age should be enjoying. That’s because of two things – his dad being able to donate a kidney and a family who made the hardest decision when their child passed away.
The new laws that are coming in are great as people will start to talk about organ donation more, but when it comes down to parents donating their children’s organs it really is ten times trickier. Before I had Frankie, my mum always said that she wanted to donate her organs and it really used to scare me. Thinking about her not being here and someone else having a part of her. But then reality hit me when my son needed a heart and I found myself waiting to see if a family would make that really difficult decision. I never thought it would happen to me, but it did.
My niece is nearly eight years old and is asking questions about Frankie and his heart. It’s difficult to know what to say. If we can be honest and talk about organ donation in a child friendly way, we will know more about what our children want, and more organs will be available for children and adults alike.
Sophie Mansuy, Frankie’s mum
