Thomas was almost five months old when we became aware that his lack of weight gain may be a sign that something was seriously wrong. My husband, Matthew, and I took him to the health visitors and the local GP numerous times raising our concerns but he was not showing any usual signs of illness and therefore we were told to wean him early onto solid food.
After yet another frustrating visit, we decided to take Thomas to A&E at Leeds General Infirmary (LGI), the hospital he’d be born in five months earlier. When we got there, the initial tests revealed that Thomas’ oxygen saturation level was just 56%, but the doctor thought there had been a mistake and so checked again. The result should have been somewhere between 96-98%. When the second result came back at just 56% again Thomas was put straight onto oxygen.
The effect was instantaneous – suddenly Thomas had so much energy and was hysterical. He was so distressed from the extra oxygen in his system, that the doctors had no choice but to sedate him and transfer him over to the paediatric intensive care unit (PICU) for further tests. We were beside ourselves.
Thomas remained in PICU for five and a half weeks at LGI whilst the doctors struggled to determine what was wrong with him and why he wasn’t recovering from the different infections they had picked up in his lungs. Although we live in Bramham, which is a thirty minute drive away from the hospital, there was no way we were going to go home and leave Thomas alone every night. Thank goodness we were told about Eckersley House and The Sick Children’s Trust.
The first two nights Matthew and I were given a small room near to PICU as a room wasn’t available for us at Eckersley House, but we knew that The Sick Children’s Trust were doing what they could to find a space for us. We had no idea such a place existed, where we would be able to stay totally free of charge on the hospital site, only a couple of minutes away from PICU.
On our third day in LGI we were given a room at Eckersley House. We couldn’t believe how clean, tidy and well-equipped the house was when we were shown around by House Manager Jane. She showed us the large kitchen, sitting room and our double room. Looking back I just remember how fantastic the staff were – always there in the background, but never in your face, quietly reassuring and considerate to what the different families were going through.
During that five and a half week period when Thomas was being closely monitored we had some visitors, who were able to come and see us at Eckersley House when they could. They brought us food and we cooked in the kitchen, which enabled us to keep ourselves fit and well to be with Thomas all day every day. We had seen the card in our room, which said it cost the charity £30 a night to support a family and so when we finally left we gave a donation to help The Sick Children’s Trust keep doing the amazing job they do. We were so grateful. A close friend also held a tea party raising a brilliant amount too.
Unable to diagnose Thomas, the doctors transferred him from PICU onto the respiratory ward and he remained there for a further three months without a diagnosis and permanently on oxygen. Throughout this period we were able to stay with Thomas on the ward so left Eckersley House.
Over four months after arriving at LGI and none the wiser, Thomas was to be sent home with oxygen and still being tube fed when doctors consulted with an immunodeficiency specialist at Royal Victoria Infirmary (RVI) in Newcastle upon Tyne. Finally somebody had an idea about what might be wrong! Further tests were done and it was discovered that Thomas had a rare primary immune deficiency disorder meaning that he did not have the ability to generate antibodies needed to fight off infections.
The reason it had gone undetected was that Thomas did not produce the usual symptoms such as a snotty nose or temperatures. The specialist explained that he must have survived so long without treatment because he had been relying on my immunity, which he had received through my breast milk, but once that immunity had run out, he had picked up a series of infections and quickly deteriorated. Doctors immediately began antibody replacement therapy, but let us know that there was a high risk of further infection and that as Thomas got older, the risk would increase.
Although we had wanted to get Thomas home, being discharged knowing your baby has an immune deficiency, is very scary. We were so worried about taking him anywhere just in case he may catch something which would send him straight back to hospital or make him poorly. And he was still unable to feed on his own, but by December we had him on a bottle. It was at this point we took Thomas to the RVI in Newcastle to meet the specialist team there to discuss treatment options going forwards.
Whilst we had been staying at Eckersley House we read about the other ‘Homes from Home’ run by the charity on the notice boards and we were fortunate that there was a room available for us at Crawford House in Newcastle when we enquired. We stayed there for two nights whilst Thomas underwent tests. He stayed with us too at the house and it was so clean and spacious. Thomas needed to be in a spotless and sterile environment and was not allowed to interact with other children – the size and layout of Crawford House meant this was possible.
The specialist decided that Thomas needed a stem cell transplant, but it wasn’t until the following June that a suitable match was found. We packed up our things at home and travelled to the RVI, knowing we would be staying there in a flat close to the hospital whilst he was treated as an inpatient. Fortunately, the transplant went well and Thomas began to grow stronger. We stayed in and near the hospital from June until the end of November 2013 whilst he recovered and was closely monitored.
When we moved home Thomas was still very poorly taking around 12 different medications a day and he was fed via a nasogastric tube (NG tube). He was not allowed to be in contact with any under 12s or anyone who was unwell. He couldn’t go to nursery or playgroups or even stay at the playground outside if another child arrived. This was a tricky time and challenging for us as parents keeping him entertained and happy. He was amazing actually, an easy patient and lots of fun! 10months after he first went into isolation in Newcastle Thomas was finally allowed to mix with other well children and he loved it. There was no shyness or lack of confidence. Again, he astounded us with his outgoing personality.
Since the transplant Thomas’ immune system has slowly developed and stabilised and I can’t believe my little boy will be six at the end of January. Stem cell marrow transplants are still fairly new, with a lot of research still being carried out and it is possible that Thomas could need further treatment in the future. However, he has a stable amount of immunity now to survive, and goes to school like any other child his age. He goes swimming and even plays tag rugby. During the winter period this year, the doctor prescribed him antibiotics, as he is always more susceptible than the other children and was quite poorly last year.
This year, I am organising a Pyjama Party at Thomas’ school to raise money and awareness for The Sick Children’s Trust, who were there for my family when Thomas was such a small baby and we had no idea what was wrong with him.
Rochelle Page, Thomas’ mum.