Greyson, a brave toddler, has undergone 10 surgeries for a congenital heart defect and experienced more pain than some people will ever experience, all in his short course of life. His parents have been told that he might not live past 30; however, his family keeps on fighting, and the resilient baby has never lost the smile on his face.
“It is my duty, as my son’s mom, to do everything in my power to change his future for the better,” Greyson’s mother, Sarah Ouellette, a clinical dietitian, told The Epoch Times via email. “Otherwise, I will live my life counting down his days.”
Sarah and her husband of six years, Brian, a firefighter paramedic, struggled to get pregnant before welcoming twin boys, now aged 4. Then Greyson, said Sarah, was a “complete but welcome” surprise.
“[He] completed our family as far as children go,” she explained. “I was thrilled at the opportunity to have a ‘normal’ pregnancy and birth experience with 75 percent fewer medical professionals, one in which my baby could be placed upon my chest right upon delivery, and one that did not involve a stay in the NICU.”
Yet, at 19 1/2 weeks pregnant, Sarah and Brian were told that their growing baby had a congenital heart defect (CHD) that “may not be survivable.”
Greyson’s official diagnosis was pulmonary atresia with intact ventricular septum, hypoplastic tricuspid valve, and hypoplastic right heart syndrome (HRHS). “He essentially has half a functioning heart,” said Sarah.
At Greyson’s birth, Sarah only had a moment with her baby on her chest before he was whisked away. “I thought he was so beautiful,” Sarah recalled. “However, I was also sad. I remember immediately grieving the journey he was about to embark on.
“I wanted to make eye contact with him to hopefully convey that I love him, I know he is strong, and I will be strong for him,” she said.
Greyson, who is now 2 1/2 years old, has undergone seven heart catheterizations, two stent placements, and one open-heart surgery. He has had two blood clots and supraventricular tachycardia (an abnormally fast heartbeat), and will likely need another palliative open-heart surgery within the first three years of life.
“After this, his heart will eventually fail,” said Sarah, “and he will require a heart and possible liver transplant.”
Despite Greyson’s hardship, his mother marvels at his bright and resilient spirit. Greyson is feisty, smart, and creative. He smiles, sings, and laughs; he can be screaming one minute and smiling the next, according to his loving mom. “He’s very loving and affectionate,” said Sarah. “He seems wise beyond his years at times.”
Greyson does get tired easily; however, he can keep up with his big brothers for a short while and has hit all his developmental milestones. “We are considered lucky for how well he has done,” said his mom.
However, by far the biggest challenge for Greyson’s parents is handing him over to nurses for a procedure. During his first catheterization at 2 days old, Greyson coded. He also had complications after a separate catheter and after open-heart surgery.
Sarah and Brian are all too aware of the worst-case scenarios. His mother also admitted that sometimes when Greyson doesn’t get up at the usual time, she fears the worst.
“To be honest, most of the time I’m scared,” Sarah said. “Greyson’s disease has no cure, only palliative treatment. He will need a transplant. He will be lucky to make it to his thirties with his current heart.”
Sarah wants to believe that Greyson will live a long, happy life, fall in love and have a family of his own, and not be held back by his disease. Counseling is helping her cope with her baby’s prognosis.
However, through it all, the mom of three is also looking outward at ways to help others endure the heartbreak of similar situations.
In 2019, Sarah began fundraising for care packages for families at Seattle Children’s Pre-natal Clinic whose unborn babies have also been diagnosed with CHD. “Each care package features items my husband and I found helpful spending weeks at the hospital,” Sarah explained of their initiative.
She also champions better awareness and improved research funding to help her son and other children with CHD stand the best chance at a healthy, happy future.
The mom firmly believes that her toddler will become an amazing person by virtue of his challenges. “One quote always stood out, ‘Wounded hearts beat the loudest,’” she shared. “[Greyson] has not undergone all this for nothing.”
Sarah believes her son “will understand true strength, determination, grit, and compassion.”
“I’m so incredibly proud of his amazing strength and tolerance to pain,” she marveled. “He is someone I look up to, and I’m so unbelievably blessed that he’s my son.”
This story was last updated in February 2021.