But the transplant would be just the beginning of young Yusuf’s medical battles. His doctors anticipated that his body could show some initial rejection of the transplant due to the fact that his donor’s stem cells were not a 100 percent match to his own.
Johannesburg, South Africa (07 February 2022) – After her new baby was diagnosed with the same deadly immune disease that led to the loss of her first son, Sadiyya Saloojee feared the worst. But thanks to a dedicated transplant medical team and a bighearted couple overseas who donated their daughter’s umbilical cord blood, that baby boy beat the odds—and is now a thriving 7-year-old.
Sadiyya and her husband Muhammed were thrilled to welcome their first child in 2007. The baby was by all appearances healthy, and they took him back to their home in Rustenburg to begin their new life as a family of three. But a few months later, when he began developing colds and flus that wouldn’t go away, and a minor operation led to a severe bout of septicaemia, the baby was admitted to the ICU and would spend the remainder of his life back and forth between the general isolation ward in the hospital and at home in full isolation.
Doctors ran a number of tests to identify the baby’s condition, which was revealed to be Severe Combined Immunodeficiency Syndrome (SCID), a rare X-linked chromosome disorder that is typically deadly. The medical team quickly initiated a search for a bone marrow donor, which would be the child’s only chance at survival, but no donor was found. He died at just 11 months old.
Sadiyya and Muhammed were devastated but were soon called back into their role as parents when they welcomed a baby girl, Mariam, shortly after their son’s death. Soon thereafter, their second daughter was born, named Khadija. Because SCID is an X-chromosome recessive disorder, the girls were not at risk of having the condition and were otherwise healthy.
But when, in 2014, the couple found out they were pregnant with a baby boy, they knew they had to prepare for the worst-case scenario: that their new child would be born with the same condition that took their first. They visited an oncologist and together developed an action plan just in case, including preparing an isolated room for him before he was even born and placing special signs to prevent vaccinations, which could adversely affect him if his immune system was weakened by SCID.
A few months later, Yusuf was born and became the first child in South Africa to be tested at birth for SCID. Unfortunately, the results were exactly as his parents feared: Yusuf had inherited the deadly condition. A bone marrow transplant would be necessary to keep him alive.
Help from a stranger
The family’s oncologist began running blood tests on Yusuf and his sisters in hopes that one of them could be his bone marrow donor, which would require their bone marrow types to “match”. Unfortunately—as is the case for almost 70 percent of patients who need bone marrow transplants—neither sibling was a match, which meant that bone marrow from a stranger would be the only way to save Yusuf’s life. The chance of finding that miracle stranger would be only 1 in 100 000.
The search for a donor began in earnest. While the family remained in tight isolation at home, the doctors contacted the South African Bone Marrow Registry (SABMR), who initiated an international donor search. Only one was found: a 9-year-old girl in the United Kingdom whose parents had stored her umbilical cord stem cells at birth in case of an illness when she grew up. The parents generously agreed to give Yusuf their daughter’s stem cells, and at just 3 months old, Yusuf began preparations for a bone marrow transplant—the youngest child for whom the SABMR had ever facilitated one.
Although he was so young, Yusuf’s medical team assured Sadiyya and Muhammed that the transplant had a better chance of saving Yusuf’s life if they did it now, rather than waiting until he was older. As he aged, he would be susceptible to more and more infections, any of which could prove fatal. And once Sadiyya stopped breastfeeding him, which afforded him some of her immunity, that risk would only increase.
So, with “lots of prayers and everyone keeping headstrong,” Sadiyya says, Yusuf was admitted to UNITAS hospital, began chemotherapy, and received his transplant in March 2015.
A necessary treatment, with challenging consequences
But the transplant would be just the beginning of young Yusuf’s medical battles. His doctors anticipated that his body could show some initial rejection of the transplant due to the fact that his donor’s stem cells were not a 100 percent match to his own.
But the consensus was that the bone marrow transplant was absolutely critical to save Yusuf’s life, so together with Yusuf’s parents, the medical team made the decision to move forward, despite the risks it would bring. And while the transplant procedure was a success, the first few months post-transplant brought a few close calls to Yusuf’s life.
“The transplant itself was a simple procedure, but inside his body was like a battlefield,” says his mother. In the next few months, as he recovered from his transplant, Yusuf would be rushed to the ICU and placed on a ventilator—twice.
The first time, Yusuf developed Hepatic veno-occlusive disease (VOD), which is a rare side effect of a bone marrow transplant. His stomach became distended, filling up with fluid until it appeared to be on the verge of bursting. For most patients, the doctors would relieve the pressure by extracting fluid from the stomach with a needle, but because of Yusuf’s precarious immunity, the procedure could risk a fatal infection.
“He was in my arms in the middle of the night, and he started turning blue,” Sadiyya remembers. “The nurses came in, but the oxygen wasn’t helping. So they rushed us on the bed up to the ICU together, me holding him in my arms.”
It turns out that the pressure from his stomach was pushing against his lungs, making breathing difficult, so doctors placed him on a ventilator. Sadiyya asked the doctors to drain the fluid despite the possibility of infection.
“It was a risk, but we had to do it. His tummy kept getting bigger, and he wasn’t urinating,” she says.
The doctors agreed to remove the fluid, and Yusuf recovered. But soon thereafter, while Yusuf was fighting a pneumonia infection, he had a coughing fit and began turning blue again. They rushed him back to the ICU and placed him on a ventilator again. Sadiyya began preparing herself mentally to lose another son.
“After losing my first son, we didn’t want to go down the road of false hope,” Sadiyya says. “So when Yusuf was admitted the second time to the ICU, I said to the doctors, ‘Please, if there’s no hope, don’t put him through this. We can accept this.’ But the doctors gave us hope. They said that we could get through this.”
Thankfully, they discovered the cause of the problem—Yusuf’s lung had popped from coughing. They put a pipe in his lung, cleared out the fluid from the pneumonia infection, and he healed.
In total, Yusuf and Sadiyya remained in serious isolation for three months and general isolation for one year. Sadiyya recollects how cold the isolation room felt in the winter and the full suits and gloves the nurses had to wear when coming to check on them. But through it all, Sadiyya says, the support of Yusuf’s medical team, as well as other parents in the ward, got her through.
“The doctors and nurses were amazing. To have that support while you’re so far away from home is so important,” Sadiyya says. “And there were so many mothers there going through their own battles with their own kids. You become a family. They become a part of you. While your kids are sleeping, you sit and have coffee together or stand outside the rooms and chat. That community is God’s way of giving you the strength to carry on.”
“The paediatric oncology ward is a very sad place to be, but it’s an eye-opener,” Sadiyya continues. “Some evenings, you lay in your bed, and you hear the doctor’s voices outside in the hall, discussing a child next door that isn’t going to make it. And you lay there wondering, ‘Am I’m going to be one of those mothers? Is my child going to be that child?’”
The emotional experience was escalated by the fact that Sadiyya spent a lot of time away from her two young daughters and Muhammed to stay with Yusuf in the hospital. Sadiyya says she always looked forward to Fridays because the three of them would come to visit her and Yusuf in Pretoria, and Sundays “were always the saddest days” as the family returned to Rustenburg for the week.
But even after Sadiyya and Yusuf were discharged from the hospital and returned to Rustenburg, the family stayed on high alert. They visited the hospital weekly for blood tests and remained in general isolation to prevent infections.
“Even when we were discharged, it’s not like we were really home,” says Sadiyya. “We didn’t allow visitors or leave the house. The kids had to shower when they came home from school. My husband had to shower when he came home from work. They had to leave their clothes at the door.”
And at the time, Yusuf was still struggling with longer-term side effects from the transplant, including colon issues, which gave him serious diarrhoea in his sleep almost every night.
But soon, these side effects quelled, and the joyful news arrived from the doctors: tests showed that Yusuf’s body had now accepted the bone marrow 100%. He would live. The family rejoiced and began the process of healing from the challenging journey.
Healthy and happy at 7 years old
Now, more than six years post-transplant, Yusuf’s SCID is a thing of the past. Besides an insulin pump to treat his diabetes, which he developed at age 3, Yusuf is healthy, full of energy, and very affectionate, with “a contagious smile that lights up anyone’s day,” says his mother.
He is 7 years old and will be starting Grade 1 this year.
“Yusuf really keeps me on my toes,” Sadiyya laughs. “He’s very mischievous. But everyone has a soft spot for him. He has been through a lot.”
Yusuf channels his endless energy into sports, especially soccer. He loves being outdoors, singing and dancing. He’s inseparable from his older sisters, now ages 10 and 12.
Looking back at Yusuf’s medical journey, Sadiyya sees how much it’s changed her family and herself.
“After an experience like that, you look at life very differently,” she says. “When you come back to reality, you start to appreciate and value the important things in your life a lot more.”
Yusuf’s family often thinks of his young donor with gratitude for giving their baby boy a second chance at life. But above all, Sadiyya and Muhammed give thanks to God “for healing our son and for blessing us with these happy, healthy, fun days together where we can watch him grow.”
Register to be a bone marrow donor
Anyone ages 16 to 45 can register to be a bone marrow donor and save a life like Yusuf’s. All it takes to register is a simple cheek swab, plus the completion of an online health history questionnaire. Cheek swabs can be done at one of the SABMR’s depot partners like Intercare or Pathcare or in an at-home kit couriered to you free of charge. Many blood donation drives also offer the option to register.
For more information, check out the SABMR’s website at www.sabmr.co.za, call (021) 447-8638 or email donors@sabmr.co.za.
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