No parent should ever have to experience the loss of a child, yet tragically, so many have. Stuart and Bonnie Lang have lived through it. Their daughter, Payton, was born with a serious heart condition that led her to spend a lot of time in and out of hospitals during her life.
“Payton was our first child, so our experience in having her became normal to us,” said Lang. “Living in and out of the hospital, taking time off work to take her for surgery and to recover was part of our lives. I didn’t want to put her in daycare at first, because I was worried about the care and medications involved, and I didn’t feel comfortable putting that level of responsibility on someone else.
“Before Payton was born, we found out she was going to have a congenital heart condition called hypoplastic left heart syndrome. It impacted her from birth, as she had her first open heart surgery when she was not even a week old. Then she had a series of three open heart surgeries before the age of four and multiple heart catheterizations and other procedures at an early age.
“After her last corrective surgery, we saw cardiology every six months and then once a year, until she was about 12,” said Lang. “When she started having growth spurts, it was like the corrections and surgeries couldn’t keep up. Then she started experiencing severe heart failure. Children with the condition are considered to always be living with heart failure, even after the surgical corrections, because they take a four-chambered heart and make it into a two-chamber one. This causes the heart and circulation to work very differently from normal.
“She started having much lower oxygen saturation levels and that indicated her heart was not functioning as well as it should. One of her heart valves started leaking quite significantly, so she needed a valve replacement. This was very traumatic because of complications from the surgery Payton’s heart didn’t maintain a proper rhythm. A week later, she had to have a permanent pacemaker put in.
“After that, things continued to go downhill,” said Lang. “Payton wound up in liver failure, which caused her to have verocies, which are like aneurysms that happen along the esophageal tract. She would have internal bleeding from it. Around this time, we ran into Lee-Anne Campbell, we had grown up not far from each other in Minitonas.
“This led to being in and out of the hospital for a week at a time. They did several things to stop the verocies, but things were deteriorating very quickly. It was then decided she needed a heart transplant and we were sent to Edmonton for an assessment. We had to live there while she was being assessed.
“It was determined that Payton needed both her heart and liver transplanted. They decided to do them at the same time because they realized she wouldn’t be able to survive one transplant without the other. During that time, Payton and I moved to Edmonton, while Stuart and Kasey lived in Winnipeg. We had to be in Edmonton waiting and were told it could take up to three years for a transplant.
“I did all of her care out of the hospital, because I didn’t want her to be hospitalized for the three years. I learned how to do pic line dressings, changes for an ART line and all kinds of medical things. Payton had all her nutrition given to her through IV and I had to do that as well.”
Despite the hardships of the Lang family being apart while Payton was waiting for her transplants, they were still able to spend some quality time together. During the uncertainty and stress of the situation, the Langs found the Ronald McDonald House was a beacon of comfort in such a time of need.
“We were fortunate to be able to access the services of the Ronald McDonald House,” said Lang. “When Stuart and Kasey came to Edmonton, we went there and they had two rooms full of handmade blankets that people donated for children to have. Every child at the Ronald McDonald House, as well as their siblings, can go to that room and select a blanket for themselves.
“Payton chose a quilt and Kasey chose one similar to it. Those blankets brought so much joy to both of our girls and they each had something to treasure. After that, Payton used only that blanket and it was her favourite thing that brought her joy.”
The Langs’ hopes fell short after Payton’s transplant surgeries. They were faced with their worst fears happening and losing Payton.
“Payton then had her transplant and it was successful, but she ended up getting a fungus, and that was what cut her life short, not the transplant,” said Lang. “At the time Payton died, Kasey was eight years old and she didn’t understand all of the things that had happened. When the doctors told us Payton couldn’t survive and that we would have to have her disconnected from life support, we spent her final night all together in the hospital room. They set beds on each side of Payton’s hospital bed and we held her as she took her last breath. Our parents were with us as well.
“We had to drive home from Edmonton without Payton, and that was the longest drive home of our lives.
“Payton was a very unique spirit,” said Lang. “A lot of children who go through major illnesses and spend the majority of their lives in the hospital experience different challenges and circumstances than others. Payton was always a kind soul, no matter how rough things had gotten.
“She was often described as a collector of souls, meaning she found people and loved them. She was like that with people of all ages. A lot of her friends reach out to me and are still in our lives.”
The Langs wanted to keep the memory of Payton alive and looked back on things that made a real impact on them during this experience. The memory of the girls picking out blankets at the Ronald McDonald House and the comfort it gave them during those tough times inspired Payton’s Comforters.
“I have always wanted to do something in honour of Payton and celebrate her life,” said Lang. “I kept coming back to the different types of gifts she had received while in the hospital. There are lots of amazing people who do and give amazing things to kids in the hospital. It came to me that I could do something and find a group of like-minded people to help me create handmade blankets to donate.
“My goal was to have something set up like at the Ronald McDonald House, where every child could go in and choose a blanket, but I found out that the Children’s Hospital has 1,000 to 2,000 children that go through it every year. That was a huge undertaking and I knew it wouldn’t get to that right off the start.
“I got in contact with the Child Life Team through the Children’s Hospital and they were interested in giving out the blankets,” said Lang. “We started giving blankets out to those children who were sickest in the hospital, until we could get to a stage where every child would get a blanket.
“I started Payton’s Comforters back in 2023, and it started off being myself and some family members who made blankets. The first year, we donated a total of 20 blankets. In 2024, we formed a formal board and are now a registered CRA charity. In 2024, we donated our 100th blanket to the hospital.
“This year we set a goal to give another 100 blankets and before the end of May, we had donated another 100 blankets,” said Lang. “In total, we’ve donated 200 blankets now. That is something that makes me so happy. So many people have reached out to us on Facebook, and they support this cause.
“Everyone has some connection to a child who has needed to be hospitalized in Winnipeg. When children are there, those rooms are impersonal and they feel overwhelmed by the situation, and having something soft, personal and theirs can bring them comfort. That is why I called it Payton’s Comforters.
“Payton’s Comforters has a wish list out there for people to donate stuff such as material or supplies to make blankets,” said Lang. “They can make a blanket and reach out to us on Facebook to donate it or money. We greatly appreciate everyone who donates to this cause.”