Brooklyn was diagnosed with CD40 ligand deficiency (X-linked hyper IgM syndrome) when he was ten months old. He had a stem cell transplant five months later.

Brooklyn’s parents have kindly shared their experience of his life-saving stem cell transplant to help inform other families who are considering this treatment option.

Why did you decide that Brooklyn should have a stem cell transplant?

As a parent, you are the one who must decide on behalf of your child whether they should have a transplant or not, and it’s a difficult decision to make. For us, the decision to not transplant presented more risks to Brooklyn. The fear of illnesses and how they might impact on him, plus the realisation that he would have to take prophylactic medication for life and face fortnightly hospital visits – we wanted more for him.

We were told that every child’s transplant journey can be different: some children will sail through without any complications, while other children can get very poorly. At times it was difficult to watch our child go through something so major, but we didn’t want Brooklyn to question later down the line why we didn’t give him a chance of a better life.

In some respects, we were extremely lucky because Brooklyn had multiple donor matches on the stem cell register, so a transplant could go ahead. We know that other families are not so fortunate and can struggle to find a good match. Brooklyn received his transplant just five months after his diagnosis, which was quick, but it was a very scary and isolating time for us as a family.

What were the biggest challenges that Brooklyn’s condition brought before his stem cell transplant?

The biggest challenge was trying to keep him as healthy as possible in the period between diagnosis and transplant. With Brooklyn’s condition, something as simple as a common cold could be dangerous, and we were quite strict with limiting contact with anyone and avoiding all the things that babies his age would normally be doing. Things like soft play, going to the shops, going to the park, even going inside other people’s houses or having family members hold or cuddle Brooklyn were off limits, which was difficult.

How did you prepare Brooklyn and your family for the stem cell transplant?

There are only two designated hospitals in the UK that perform transplants for children with immune deficiencies, one of them being the Great North Children’s Hospital in Newcastle. A month after Brooklyn received his diagnosis, we went there to have a transplant assessment. The assessment involved meeting lots of specialist doctors and Brooklyn undergoing various tests (such as ultrasounds) and extensive blood work.

It was quite an overwhelming and scary visit, with lots of information to digest on the transplant process, what it involved and the risks associated with the procedure. But, at the same time, it was nice to meet those who would be involved in Brooklyn’s care and to see where we would be spending our time.

There wasn’t much that we could do to prepare 15-month-old Brooklyn as he was too young to understand what was going to be happening. As a family, we just knew that whatever happened, we wanted to give him the best chance of a healthy and fulfilling life.

The team in Newcastle were good at keeping us informed about the timeline of events, and about a month after our visit, we got the great news that we had a date for Brooklyn’s transplant.

 Can you walk us through Brooklyn’s stem cell transplant journey?

In early October, we moved to Newcastle, and Brooklyn had a Broviac central line fitted under general anesthetic. Two weeks later, we were admitted to Ward 3 of Great North Children’s Hospital, which is a specialised ward designed to protect children from infection as they go through their transplant. The rooms are sterile with filtered air and there are strict hygiene rules about what you can and cannot do in the room.

To prepare Brooklyn’s body for transplant, he was started on three different types of chemotherapy to wipe out his immune system and make space for the new healthy stem cells. The chemotherapy made Brooklyn quite sick and he went off food very quickly, so he began total parenteral nutrition (TPN) administered through his central line.

The day before his transplant, we received the good news that the donor had successfully donated their cells. Then, on the afternoon of 27 October, Brooklyn received his life-saving stem cell transplant through a transfusion.

The first two weeks post-transplant is usually the toughest on the body due to the chemotherapy, and Brooklyn needed several blood and platelet transfusions and lots and lots of rest and cuddles.

We were on the ward for almost four months post-transplant as, unfortunately, Brooklyn developed some complications with his kidneys and blood pressure which needed extra monitoring but, eventually, he was in a stable enough position to be discharged from the ward. A month after that, Brooklyn had his central line removed, and then a few weeks later we made the journey back home.

How has Brooklyn’s health and quality of life changed since the transplant?

It is almost a year since Brooklyn’s transplant and his life is very different compared to this time last year. He has to continue immunoglobulin replacement therapy until January 2025 while his new immune system takes hold. Similarly, he needs prophylactic antibiotics and antiviral medication, and he still has some post-transplant issues with lack of appetite and high blood pressure, which are being monitored and managed.

Aside from these things, however, he can now do all the ‘normal’ things that he missed out on and which are probably taken for granted: things like cuddling his grandparents and going swimming. Brooklyn always was a happy and sociable baby and it’s just so nice to see him interact with others.

Looking ahead, what are your hopes and goals for Brooklyn’s future?

As a family, we have always wanted Brooklyn to be able to live a happy and full life and not have to worry about illnesses and infections. This is now possible thanks to the kindness of a stranger, and something we will always be grateful for.

What advice would you give to other parents considering a stem cell transplant for their child?

Ask questions – anything that comes into your head. It will help you deal with the stress involved. Prepare yourself mentally because going through a transplant is tough. Don’t expect to see overnight changes in your child’s health; recovery is a gradual process and it may take months to see significant improvements. Accept any support that your family, the hospital and support organisations offer. Stay strong.

Posted October 2024