Donating stem cells to your sick brother or sister – how does it work?

What you should know about stem cells

The human body consists of billions of cells, divided into different types, each with its own function. For example, muscle cells enable you to move, red blood cells transport oxygen, and white blood cells play an important role in the immune system.

Because blood cells are so essential, the body constantly produces new ones. This happens in the bone marrow – the soft inner part of the bone, also known as the body’s blood factory. In this blood factory, stem cells are made that develop into red and white blood cells and platelets. In leukemia, this process no longer works properly.

“I used to play a lot of sports but noticed my fitness getting worse. It was exam time, so I thought that was why. But then I caught the flu and just didn’t recover. After a second appointment, where they took blood samples, I got a call that evening: it turned out to be leukemia. I also had a DNA mutation in my leukemia cells, which couldn’t be treated with chemotherapy alone. A stem cell transplant was my only option,” says Maud.

What is a stem cell transplant?

In a stem cell transplant, the damaged blood factory of the sick child is replaced. This is done by collecting stem cells from a healthy donor’s bone marrow. The stem cells are then given to the child through an IV infusion, where they build a new blood factory.

Finding a suitable donor

Pediatric oncologist Birgitta, who collected the stem cells from sister Noor, explains:

“We always first check whether a brother or sister is a match. The chance of that is 25%. The better the match, the greater the chance that the transplant will succeed. If there’s no match, we look for a donor in the bone marrow registry.”

To determine if you are a suitable donor for your sick brother or sister, tests are performed at the Wilhelmina Children’s Hospital.

Nurse practitioner Marieke, who guided Maud and Noor, adds:

“A blood test is done, and an independent doctor checks whether you are healthy enough. You also talk to a child psychologist, who asks whether you really want to do this. Afterward, a juvenile judge reviews the process to make sure everything is done ethically and safely.”

Noor remembers all the checks, as does her sister Wies:

“When I heard Maud was sick, I wanted to help right away. But of course, I couldn’t — I can’t help with chemo. When I found out that I could help by donating stem cells, I wanted to be tested as soon as possible.”

Even though both sisters wanted to donate, only one was a match. Wies’s tissue type matched Maud’s by 50%, but Noor’s was a 100% match.

“It was a celebration in Maud’s room that day! We found out that she had passed her exams and that I was a suitable donor — all on the same day,” says Noor.

The operation

The operation to collect stem cells (called harvesting) usually takes place early in the morning. This leaves time to prepare the cells in the lab if needed, so they can be given to the sick brother or sister the same day.

Noor recalls:

“I had to come in the day before so they could make sure everything was ready. I stayed overnight in the hospital. The next morning, I put on a gown and got a patch for the IV. In the operating room, I fell asleep under anesthesia. I wasn’t nervous, I just hoped they could collect enough stem cells to help Maud. In the end, they harvested 1.1 liters — a huge amount!”

The operation took about an hour.

“We make small punctures in the donor’s lower back and use a hollow needle to draw bone marrow from the hip bone, where most stem cells are found,” explains pediatric oncologist Birgitta. “Sometimes we collect 300 milliliters, sometimes up to a liter.”

Contrary to what many people think, the stem cells are given back to the sick child through an IV — no surgery is needed to receive them.

Feeling tired afterward

After the operation, donors are often tired and have soreness in their back. For some, this lasts only a few days; others may take longer to recover.

“After the operation, I was sleepy and craved pancakes. I remember calling a friend from bed while eating mini pancakes. Later, I was wheeled to Maud’s room at the Máxima Center. We waited together for the stem cells to arrive. I didn’t feel great, so I rested on the second bed in her room. The fatigue lasted a few months. I had headaches and couldn’t exercise much, but I’m slowly getting back to normal now,” says Noor.

Aftercare

A few weeks after the transplant, the examining physician calls the donor brother or sister to check how they’re doing and whether there are any concerns. Since the sick child stays at the Máxima Center — where families can sleep over — there’s often still regular contact with the pediatric oncologist.

Noor feels that aftercare could be improved:

“Before the procedure, you have to talk to a psychologist and a judge, but afterward there’s almost nothing. It would have been nice to have a follow-up conversation. We’re here today for Maud’s check-ups, and it would’ve been good if they’d checked in with me, too.”