Umbilical cord blood saved Lyla Edgington’s life when she was diagnosed with the progressive genetic disease Hurler Syndrome (a mucopolysaccharide storage disease, MPS I). In an interview for World Cord Blood Day 2018, Lyla’s parents Steve and Helen Edgington shared Lyla’s story.
“It all started when Lyla was 5 months old” explains Lyla’s dad, Steve, “and we found she had a slight problem with her spine and she also had a slight murmur in her heart. Our paediatrician put the two together and got her genetically tested. The results came back with the worst possible scenario: that she had Hurler Syndrome. Our world fell apart. But then all good news followed. As soon as we found out she had Hurler’s Syndrome the search was on for a donor and within weeks we had a perfect match…”
“Our first choice was cord blood.”
“Cord blood transplants have been found to be more successful in MPS patients,” explains Helen. “From day one we felt so confident. I actually wasn’t even scared if you can believe that… I just knew it was going to be successful.”
“She was the best patient.” Helen goes on, “She loved being in the hospital, she was only about 11 months old, and she just loved the attention. Whenever someone walked past, whenever the doctors came in she was really curious about what they were doing… so she made life in the hospital bearable and even at times fun, as we got to spend so much time with her.”
When the umbilical cord blood arrived, Lyla’s parents were amazed at how quick the transplant process was. “The baby was two years older than Lyla,” says Steve, “it was a little girl born in California… she’ll be five now… and she was a perfect match… and she and her parents who decided to store cord blood saved her life.”
“It was quicker than a blood transfusion,” says Steve, “it took 20 minutes. A lot of kids celebrate it like a second birthday. We had a cake, and a glass of champagne.”
“We were so happy that day, and Lyla was happy that day.”
After the transplant there’s a hundred-day process, explains Helen, “for the first couple of weeks, we were waiting for engraftment to happen… The first week was pretty hard. The main thing was for Lyla to stay infection free. Some of that was in our hands so we were pretty cautious. The door of the hospital was shut straight away, and Lyla was not allowed to leave the hospital room the entire time we were there… we kept the room really clean…”
“We were at the hospital for six weeks.”
“The first two weeks were the hardest… all Lyla’s hair fell out and that was hard as a mum to see that… it was hard to see her not feeling well. She had a lot of sores in her mouth in her throat, she stopped eating for a while so they fed her through IV, she had a tube in her stomach… but really after that everything was a pretty steady uphill climb. Lyla was such a trooper and every time the doctors visited there was good news…”
“Then on about day 20, we found out that Lyla had engraftment.”
“The chemo wiped out all her cells and the new cells went to her marrow and created new cells… and every single day her cell count went up. It was amazing, it really was.”
The family then moved to the Ronald McDonald House in Minnosta. “Everyone there is in the same boat,” says Steve, “there are dozens of families all going through the same thing… all helping each other supporting each other.”
“The main thing was keeping her in isolation,” says Helen, “which luckily as she was so small, she was just starting to crawl, she was walking her push toys, she had her first birthday in there, she didn’t miss the outside world.”
“Hurler’s Syndrome, is a progressive genetic disease.”
“So, even though Lyla didn’t have many symptoms when she was born, they get worse as you get older we were so lucky that her disease was caught early but that stem cells were readily available.”
“Yes, because every month counts with this disorder,” adds Steve.
“It was like a ticking clock.” Helen agrees.
Why is it so important that people donate their cord blood?
Without missing a beat, Steve replies, “Because it doesn’t cost a cent to donate your cord blood, and it saves childrens’ lives.”
“I just love the saying: in creating one life why not save another?”