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A donation from the heart

When Heather Potts and her husband welcomed their second child into the world on October 2, 2010 after a healthy pregnancy, they never expected things to take an immediate turn for the worst.

Within 24 hours, their newborn daughter, who had yet to be named, went from being seemingly healthy to having issues maintaining a healthy body temperature as a “rash” spread upward from her feet to her lower body. At barely 40-hours old, their child was rushed by ambulance to the Children’s Hospital of Eastern Ontario (CHEO) in their hometown of Ottawa for emergency care.

“What we thought was just a rash was actually a purplish skin discolouration caused by low oxygen saturation,” recalls Heather. “Our daughter, barely clinging to life, couldn’t breathe enough to keep herself alive and needed immediate attention. To be told your unnamed newborn may not make it through the night was unimaginable. I couldn’t bear the thought of burying our daughter without a name.”

Understanding the reality of the situation, Heather and her husband decided to name their daughter the only name they had come close to agreeing on, Evelyn. For a middle name, the couple chose “Victoria” hoping she would be victorious in her fight.

The quick and skilled actions of the CHEO intensive care unit were able to stabilize Evelyn and soon discovered that she was born with hypoplastic left heart syndrome (HLHS), a rare and complex congenital heart defect where the heart’s left side is critically underdeveloped. Unfortunately, treating Evelyn for HLHS was beyond CHEO’s capabilities. Not wasting any time, the SickKids Acute Care Transport Services (ACTS) was contacted to transport the newborn to the Hospital for Sick Children in Toronto.

As the SickKids ACTS ambulance pulled away with their child, the Potts, devastated by the horrible turn of events, made arrangements to follow their daughter to Toronto by train. Late in the evening, the Potts were safely in Toronto and placed in a hospital room within arm’s reach of their daughter and the doctors charged with her care. For the next 10 months, SickKids and CHEO would be one of Evelyn’s two homes as she fought to stay alive.

Evelyn, now nicknamed Evie, had the first of three corrective surgeries only 10 days into her life – surgeries that were crucial to increasing her chances of survival. Using a procedure developed by SickKids called the “Hybrid”, the first surgery was a success and the Potts were transferred back to the CHEO in Ottawa and discharged shortly thereafter.

During the following three weeks at home, the Potts saw Evie’s health decline once more, or as Heather puts it, “Doing things the hard way.” She was re-admitted to CHEO and for the next four months she stayed at the CHEO, with the occasional air ambulance transfer to Toronto for emergency interventions. During one of those emergencies, Evie’s little heart arrested, requiring two minutes of CPR and three shots of epinephrine before coming to.

By this time, the medical team in charge of Evie’s care concluded that she was no longer healthy enough to undergo the second HLHS surgery. Ultimately, a second surgery would, in all likelihood, be fatal. Running out of options, the team proposed a heart transplant.

“Even though we suspected that things were moving in that direction, it was a real blow to hear those words,” says Heather. “What the team said was ‘She needs a heart transplant to live.’ What I heard was ‘She was dying.’”

One of the biggest obstacles that became apparent to Heather was that in order for a heart transplant to even take place, the size of the heart needed to be just right. Recipients must wait on a list before the right heart becomes available, which could take months. This meant that Evie needed an unknown family to make the unthinkable decision of donating an appropriately sized heart as soon as possible – something that was beyond anyone’s control.

Accepting the transplant as a viable option to save their daughter’s life, Evie was placed on the transplant recipient list – an estimated wait time of three months. Once listed, the family remained close to the Hospital for Sick Children, the main centre for pediatric heart transplants for eastern Canada. Evie’s condition continued to worsen and was given 2:1 nursing care, medications to help her heart function, blood thinners by injection twice a day, blood transfusions and equipped with a CPAP breathing machine with oxygen 24 hours a day to help ease the burden on her heart.

Being in contact with other families at the hospital who were in a similar situation gave the Potts hope for Evie’s future. Children with cardiomyopathy and HLHS similar to Evie received a second chance at life through organ donation. Many of the children who underwent the transplant went on to live full and “normal” lives. But not all stories were ones of success. Heather met a seven-year-old girl living with HLHS who lived through her three corrective surgeries for a number of years before passing away from heart failure while waiting for a suitable organ donation. Heather attended the funeral along with many of the nurses who cared for the girl over her life.

On the days Evie could handle it, the palliative care team arranged for volunteers to sing and perform at her bedside. They were also there to comfort Heather, who was away from her son and husband for weeks at a time, acting as a soundboard and helping her to understand and cope with what was happening to her child.

“Despite all these things going on, the staff let me bathe my Evie at her bedside every night,” recalls Heather, who praises the staff for their patience and professionalism. “One day, when I was feeling particularly down, the staff arranged a little trip for us down to the atrium hall that was lined with windows. It took 20 minutes to set everything up, and we stayed for maybe three minutes, but the staff did all the fussing for us. That moment was special for Evie and I.”

After three and a half months of waiting, the day finally came when a suitable heart was received, potentially giving Evie a second chance at life. Months of ups and downs were riding on the success of this operation. After hours in surgery, Evie emerged with a brand new heart, ready to recover and live life at home where wall-to-wall hospital equipment didn’t decorate her room. Within two weeks of the transplant, Evie was released from the hospital into Heather’s care while they stayed at Ronald McDonald House Toronto. This was the first time Evie was truly out of hospital care since birth.

A month after her transplant, Evie was discovering the world just like any other child her age. She began hitting milestone after milestone never missing a beat, with the exception of feeding. Being tube fed her entire life made oral feeding a struggle, requiring two years of practice and patience before she got the hang of using her mouth. Since learning, Evie now eats her fair share at the dinner table.

Today, at six years old, no one would be the wiser when looking at Evelyn. Her sordid past is overshadowed by her intelligence, independence and headstrong personality. She adores her big brother and often drives her parents crazy. Heather says that her daughter wouldn’t be climbing the steps into the school bus every morning on her way to school if it wasn’t for an unknown family’s act of selflessness.

“It’s all because of a family that, at a time that I can only imagine to be the most tragic in their lives, was able to see a light through their immense pain when they lost their child. This family was able to imagine the good donating would do for another family in need – a single life that might be saved by their act of genuine kindness.”

Because of her experience, Heather has become a strong advocate for organ and tissue donation, sharing her story to illustrate the difference a single donation can make. These very donations save lives young and old – Evie and the children the Potts family met along their journey are living proof. Even though Evie lives with a few manageable complications, she can now grow up concentrating on being a kid and experiencing the world like only a kid can.

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