Owen’s story

Six-year-old Owen was diagnosed with X-SCID in 2013, aged 15 months. His diagnosis prompted the need for urgent treatment and involved the family moving from Wales to Newcastle, where Owen had a cord blood stem cell transplant. After spending nearly 25 weeks in hospital, Owen made a strong recovery and the family returned to Wales. His dad, Ian, shares their story.

Owen’s early years

Owen had a history of ear infections and had a bad bout of rotavirus infection that was very slow to clear. He also had recurring conjunctivitis and wasn’t gaining weight as he should. When he was between 6 and 12 months old, Owen’s health deteriorated quickly and he became very poorly. Although he bounced back, the underlying cause of his illnesses and their frequency often remained unknown.

Diagnosis of SCID and flying by the seats of our pants

After contracting pneumonia and sepsis 10 days after receiving the MMR injection at 13 months old, Owen was diagnosed with X-SCID by Dr Jennifer Evans, a consultant immunologist specialising in paediatrics. Dr Evans was doing a full lymphocyte cell count, including analysing the number of different T-cells and their function in Owen’s blood, when she noticed things weren’t ‘quite right’, so she consulted Dr Stephen Jolles, head of the immunology centre in Cardiff. Dr Jolles contacted us straight away and told us there was no time to waste. Owen was rushed to the ‘bubble unit’ at the Royal Victoria Infirmary, Newcastle, as a medical emergency.

That was in August 2013 and it involved a family move of ‘unknown duration’ from Wales to Newcastle. It felt like a ‘fly by the seat of your pants’ moment for all of us. We were advised that the best way forward was a stem cell transplant.

Search for a donor

It was difficult to take on board the realisation that to make Owen well (as he was presenting at that time) we had to make him ill. A search for a donor started immediately. We found that Owen’s sister was not a match. Luckily, through an international registry, a cord blood donor was found in Finland.

While we were waiting for the match, Owen became seriously ill with meningococcal meningitis but, looking on the bright side, we felt we were in the best place to cope with this, and the care was excellent. He recovered well from the meningitis but the illness reduced the chances of the transplant being a success. It was a testing time for all of us.

Having the BMT

My wife and I completed eight-hour shifts to look after Owen. The transplant itself was a big anti-climax. We got used to the daily blood counts to see if the transplant had worked and we started to see slow engraftment. We had already been told that engraftment was slower with cord blood stem cells than with other sources of stem cells, so we were prepared for this. However, at four weeks, Owen was given G-CSF to speed up the engraftment process. On day 47 post-transplant we were transferred to the hospital’s half-way house. We thought we were on the homeward stretch, but then Owen had an infection and was re-admitted to hospital for eight days. After that setback it was clinic visits twice a week, and there was always someone available 24/7 to help us with any queries.

Back to Cardiff

I must admit, it was with a sense of trepidation that we left Newcastle, and a few tears were shed because we had become such good friends with the staff who had supported us throughout Owen’s transplant. Now everything has come full circle and we are again in the capable hands of Dr Stephen Jolles and his team. Owen has to have immunoglobulin therapy to help top up his immune system, and we have regular clinic visits.

Owen now

Nearly five years post-transplant, our little boy is extremely well. He is rarely ill, and if he does become ill, he recovers much quicker than all of us combined. He has lots of T-cells and has now received all his newborn vaccinations.

Our journey was difficult emotionally, not helped by the logistics of having to leave our home in Wales to go to Newcastle. We cannot praise the care we received highly enough. Thank you.

Wish list

  • A newborn screening programme for X-SCID. We were lucky, but there are many parents who have lost a child because SCID was not diagnosed. That is tragic.
  • More ‘bubble units’ around the country that are able to deal with cord and bone marrow transplants.
  • That the cord blood bank is linked to the bone marrow registry and blood banks, since they are both in Finland. 

Posted August 2018