I was in pieces when I was told that Kori probably wouldn’t survive but Linsey was there with hugs.
We started off 2019 hopeful, rather than fearing for Kori’s life, as we thought it would be the year he started school for the first time. But after he started school in September 2019 he became ill and by November we were told he had just hours to live.
Kori was born with a rare heart condition, Hypoplastic Left Heart Syndrome (HLHS) in which the left chamber doesn’t form properly, and blood cannot flow normally throughout the left side of the heart. HLHS cannot be cured, but children can have their lives prolonged as much as possible. Ever since Kori was born he’s known hospital life. From one day old when he had his first major heart surgery (stage one of three to be had, the Norwood, Glen and Fontan) to now after his second heart transplant.
I had always believed that Kori would magically be ok if he had all three surgeries but he never had the third, the Fontan, as we were told he simply wouldn’t survive it. At seven years old he needed a heart transplant to stand any chance of survival. I was devastated, it was a huge blow as I had no clue that a transplant was even on the cards.
“We were so far away from our home in Derbyshire that we were given a place to stay at Scott House run by The Sick Children’s Trust. This was incredible as it meant I could be close to Kori without worrying.”
Kori had to undergo tests at Freeman Hospital, in Newcastle, which is one of the very few paediatric transplant centres in the country. He was an inpatient during these tests and we were so far away from our home in Derbyshire that we were given a place to stay at Scott House run by The Sick Children’s Trust. This was incredible as it meant I could be close to Kori without worrying. Kori was listed for a transplant at the end of January 2018 and I was told that there could be a two year wait for a new heart. Fortunately, we didn’t have to face this wait in hospital and headed home to join my partner and Kori’s stepdad, John, his big sister Ebony and newborn sister Ostarra.
Our family was reunited briefly, before telephone rang to tell us a donor heart was available and that an ambulance was on its way to pick us up. I panicked grabbing everything I could fit into a suitcase for me and Ostarra, who I’d not long given birth to. Whilst waiting for the ambulance, Kori and I made clay handprints. I told him it was to pass the time, but really, it was in case the worst happened and he didn’t survive and so I would have something precious to keep.
In the ambulance, I held Kori’s hand, watching him breathing and praying that he would survive.
I was once again given a beautiful room in Scott House to take my suitcase to. Having a place to stay that is not only on the grounds of the hospital, directly opposite a main entrance (making it super easy to get to the wards) but is also beautiful, clean, accessible, safe and has all of the amenities that a family could want gave us a chance to a remain a family with independence during such horrific times. Being so close to the Paediatric Intensive Care Unit (PICU) helped immensely as I could be there in literally minutes if anything happened. Without it, John wouldn’t have been able to stay as long, I would have missed out on valuable time spent with my child who was dying, as I couldn’t sleep on PICU so I would have had to somehow find accommodation away from the hospital, which there is no way we could afford as well as running our house back home. Kori could have passed away at any moment, he was that poorly, so should that have happened, I wouldn’t have been able to get to him so quickly.
“Without Scott House I would have missed out on valuable time spent with my child who was dying.”
Kori recovered really well following his heart transplant and despite still needing three weekly immunogloblin infusions at our local hospital in Derby, he was able to attend school properly for the first time in his life! Things were starting to look up.
By the time November 2019 came around, things were looking very different. Kori became very sick suddenly and was rushed to Birmingham Children’s Hospital where he literally fought for his life for a month. We were told he would die. He was blessed by a chaplain and John and I had a blessing/handfasting ceremony with Kori’s hands in ours, as we were due to get married in May 2020, and I couldn’t bear to not have Kori present.
Kori defied all the odds though and clung to life, so when he was stable enough, he was blue lighted to Freeman Hospital in Newcastle again, in a critical care ambulance with me and John followed with Ostarra in my car.
“Linsey was a huge comfort. When I was in pieces as we were told that Kori probably wouldn’t survive, she was there with hugs, chats and helped in every way she possibly could.”
As soon as Kori was admitted and settled, we were told that there was a room becoming available in Scott House the next day, so for the first night, we were given a local hotel, but I couldn’t sleep. I had huge anxiety attacks all night and needed to be close to Kori.
We saw a familiar and friendly face, Linsey who was the manager at Scott House. She hugged me so much, I cried. She gave us a beautiful family room and said she was on hand if we needed anything. She was incredible. She was always smiling and there to help with things most others wouldn’t think.
Linsey was a huge comfort. When I was in pieces as we were told that Kori probably wouldn’t survive, she was there with hugs, chats and helped in every way she possibly could.
We knew we would be in hospital for Christmas when Kori deteriorated suddenly and told that he would need a second heart transplant to survive. From then, we knew we would be in Scott House as long term residents. Linsey moved us to a bigger family room at that point, so Ebony (who we hadn’t seen since November) could stay. Without the ‘Home from Home’ environment and emotional support offered; I think I would’ve had a full nervous breakdown finding out my son had to have yet another heart transplant.
“Scott House is priceless and The Sick Children’s Trust is amazing.”
I was dreading Christmas in hospital to be honest, as we have always been very traditional and made it a huge event at home. Scott House gave us some kind of normality in such hard times which was precious. We put a little tree up and lights and had a Christmas eve and Christmas morning with Ostarra and Ebony. The day was made special by everyone from Scott House, the doctors and nurses who didn’t mind working at all, and parents who had lost their own children. There were decorations, advent calendars and lights everywhere, along with hampers, not just for the kids, but for parents too which made us really emotional and we felt so immensely humbled.
On Christmas day, Kori was in intensive care, unable to eat or drink, he was very, very poorly, and we were told to go to the canteen and were given a Christmas dinner after helping Kori to open his presents as he was so weak. It didn’t feel right without him and we felt guilty as he wasn’t allowed to eat, but were told that he was being looked after and it was important for Ostarra and Ebony to also have a Christmas dinner, so that was really special.
Kori is now home after spending almost six months in hospital and receiving a second donor heart at the start of this year. We are at Freeman Hospital three times a week for immunoglobulin infusions and transplant clinic. He is still recovering, but he is alive, cheeky and a pure joy to have home! He is scarred from this experience though. We are friends with his first donor’s family, we even have pictures of Elliot, who was only 14 at the time, around our house. Kori is now struggling to come to terms with no longer having Elliot’s heart but having another boy’s heart. He just wants to know who this heart belonged to, so I have written a letter to the new donor’s family and we hope they will write back.
Kori’s post-transplant journey this time round has happened during the coronavirus. Not being able to mix in public has meant the garden has become the most exciting place to be! With help from locals and followers of Kori’s transplant page on facebook, we were donated a greenhouse, play equipment, vegetable plants, planters, sandpits and garden accessories and even a GoFundMe was set up so we bought a huge summer house as a beautiful play shed for Kori and his sisters to relax in. We now grow lots of veg have bought a couple of beehives and bees, keep chickens and ducks, so we are living in a little bubble of hippiness at home and Kori is loving it! He’s also looking forward to his birthday, I have promised him a carnival/fairground party with coconut shays, candy floss stalls and games with a BBQ to make it special for him.
We are already planning Christmas and Kori wants to be a chef, so he’s asked for a chef’s hat so he can help with Christmas dinner this year. He will also have his own tree, in his own bedroom, which he is very excited about! I daren’t plan too far ahead, but whatever we do, as long as we are all together, that’s all that matters. We have already got a big bag of new toys to take with us to ward 23 play specialists, to put away for other children who are in hospital over Christmas this year.
There are not enough words to say to The Sick Children’s Trust, to all of the medical staff, domestics, clown doctors, catering staff and Linsey personally to express my absolute gratitude, love, respect and thanks for all of the help and support. Scott House is priceless and The Sick Children’s Trust is amazing and to both Elliot’s family and the new donor family, we are so grateful to you for helping to save Kori’s life.
Pixi (Kerrylee) Stovell, Kori, Ebony and Ostarra’s mum
