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case study
Harley’s Story
In 2009 a three year old boy called Harley had his world turned upside down, here is mum Samantha Lane tells us about the journey they have been on and why she is grateful to Royal Manchester Children’s Hospital…
It was one month before Harley’s fourth birthday – I was working at a children’s play centre and my sister brought Harley in. He ran around and then stopped – he just didn’t seem himself.
That night we stayed at my mums, Harley had a raging temperature; he wasn’t hungry but he was drinking. I set the bed up and when I got in with him I could feel that his hands and feet were cold and I noticed that he was grey – Harley has epilepsy and he always went grey when he was going to fit so nothing seemed out of the extraordinary.
At 3.15am Harley woke up and asked for medicine. I got up to get him some and put the light on, he put his hands over his eyes and then I noticed something on his neck. When I looked closely I could see a black rash. I wrapped him in a blanket and went straight to A&E at Stepping Hill. As soon as we arrived they ran to get a nurse, the nurse grabbed Harley and took him straight to resus.
The paediatric doctors came down to see us and talked about meningitis. They told us Harley was very poorly and needed to go to the intensive care unit (ICU) at the children’s hospital. I rang my partner Adam who was at home with our other son Tyler and asked him to come straight to the hospital.
At 5.30am we were put into a family room at Stepping Hill while the team from the children’s hospital vented Harley and got him ready to be transferred. At 6.45am Harley was black from head to hip and his legs were a lavender colour.
At 8.30am we arrived at the children’s hospital to see Harley with about ten people around his bed, when I walked on to ICU they were resuscitating him. At that point I was hysterical; after four minutes they got him back and we were told to prepare for the worst as our little boy was very, very ill – he had meningococcal septicaemia type B.
Harley was wrapped in a type of cotton wool and they started to pump him with blood. That night I was by his bedside when his heart rate shot up to over 230 and then the worst thing my little boy flat lined. I was convinced he wasn’t going to survive but then I refused point blank to believe he would leave me. The doctors started CPR and got him back, 15 minutes later his heart rate shot up to 303 and he flat lined again – the nurse had him back in seconds.
Because his temperature was so high they had to use a kidney dialysis machine to take the blood out, cool it and put it back; but his hands and feet were still cold.
The consultant Peter-Marc Fortune was fantastic, his shift should have finished but he told us he wouldn’t leave until he was happy that Harley was comfortable and stable. That meant a lot to us as we knew that our son was in great, safe hands.
At 1.30am the following morning Peter-Marc told us he was going home as Harley was comfortable but the next 48 hours would be critical. 24 hours after I noticed the black rash I fell asleep for a few hours.
For the next few days we sat at his bedside as doctors battled to help him. His fingers had gone black and curled, we knew he was going to lose them and I worried that they would snap off. Harley was covered in dressings and they were changed a few times day.
After ten days, Harley was brought out of his coma, I expected him to just wake up but he didn’t. Doctors told me there was a possibility that he could have brain damage.
After three days out of his coma, the machine was still breathing for him but I could see that his belly was moving and that he was trying to breathe for himself.
On the fifth day of being out of his coma, I decided to go home for the first time, just for a few hours. I went over to his bed and told him that “mummy is going home but will be back in a bit.” Harley responded to my voice, he tried opening and shutting his eye.
Over the next few days he started responding more, he was still on a ventilator but he was getting more and more awake, it was such a nice feeling to see him try to smile.
We met with doctors from the plastics team and even though I knew it was coming, it still hit me like a ton of bricks to be told that our brave son would have to have all four limbs amputated.
Because Harley had previously been unstable they couldn’t take all four off at the same time so they amputated his legs below the knee first – he was in theatre for six hours.
When he came back, I was stood over his bed and they asked did I want to see, I said yes. I remember it was neat and because Harley was looking I didn’t cry. I covered him up, kissed him. I hadn’t even got off the ward when I collapsed and cried.
A few days later they amputated his arms from below the elbow, which took five hours. When he came round he didn’t notice as he had phantom limb pains. One day he looked at me then at his arms, and then back at me, part of me didn’t want him to ask me about them. I can only remember him getting upset once and he shouted: “I want my arm back.” But he never complained about his legs.
In June, three days before his birthday, he moved to the High Dependency Unit at the new Royal Manchester Children’s Hospital. There he was in theatre every two days to have his dressings changed and he also had 23 skin graft operations.
In August he moved from HDU to a ward and started rehabilitation. A national newspaper also organised for him to receive a visit from someone he loved – Sportacus. He loved that day so much; it was nice to see him so happy.
One day we were sat in his room and he said “look mummy”, when I looked he was moving his arm up and down – that made me cry. Harley continued having physiotherapy and the bandages started to come off.
In the middle of September, five months after Harley was first admitted to hospital, Harley sat on my knee and I had my first cuddle. Then at the beginning of October we dressed him for the first time.
We were told he could come home for a weekend in November, but as we had moved we still had to get the new bungalow ready. Adam got swine flu so I had to stay away from the hospital too so I concentrated on making sure it was right – with the help from community service, while my mum stayed with Harley at hospital.
On the Saturday we went to pick him up, we had a little suitcase with his bits in and medicines as he was on lots of different medication. Harley loved the new house and he watched tv. I was on tenterhooks the whole time but it was nice to have him there even if I did check on him every ten minutes.
He went back to the hospital on the Monday and that week we had a meeting about Harley being discharged. Harley came home on 2nd December.
At a check up appointment on the 15th December they re-admitted him as he had lost 2 kilograms. He had to have something known as a bard button fitted which would mean a Gastrostomy tube would feed him.
Harley came home on Christmas Eve. Being at home settled him more. In March 2010 he stopped using the Gastrostomy as he was eating fine. He continued to have check ups at the hospital and even went back to school for an afternoon a week and went back full time in January 2011.
Harley has got better a lot quicker than I thought he would and is now using prosthetics limbs. In fact he made his teacher cry recently as he just stood up and walked to the other side of the room. When he was waiting to get his hands he kept saying when they give me my new real hands and we had to explain that they weren’t real; that was really tough. He is great and he has been brilliant in dealing with what has happened to him. If a child asks he says “I got poorly and they took them away.”
He will continue to need prosthetics through his life as he grows up but he isn’t letting it stop him having fun.
Harley needed the expertise and care of Royal Manchester Children’s Hospital. Before then we didn’t realise the work that goes on there. We know from experience the importance of having up to date equipment, an environment that is child friendly and things to distract a child along and how research can help us to understand and develop treatments for the future.
Royal Manchester Children’s Hospital charity is making a difference to patients, like Harley, everyday.
