For Sean and Ailian Evans, it is the simple memories they will treasure the most – the first time their son Nolan saw the outside of a hospital room, his first Christmas, his first trip to the beach.
They will always remember the smile he had for everyone at the hospital, even as he endured seven surgeries in the space of six months as doctors fought to save him from the worst consequences of a congenital heart defect.
“He was very strong. He endured more than most adults could cope with,” said his mother, Mrs. Evans.
Nolan died in hospital in Miami on Jan. 25, aged just seven months and three days. For his parents and sister Ashlyn, his life was both cruelly short and more than they dared to hope for.
“He was the happiest boy, even in the hospital. He was always so sick but he always managed a smile,” Mrs. Evans said.
Now they hope to turn their grief into something positive by raising funds and providing support to families in the same situation.
“I have all this love in my heart for Nolan and I have to use it to help someone else,” she said.
Mrs. Evans plans to volunteer her time to raise funds and awareness about the impacts of congenital heart defects.
Family and friends have already raised money to support two Cayman heart charities in memory of Nolan.
Classmates of Nolan’s sister Ashlyn, 11, from St. Ignatius Catholic School, raised $500 for Have a Heart Cayman Islands, which supports children from developing countries to have heart surgeries at Health City. Mr. and Mrs. Evans collected a further $2,200 and the children visited the hospital to present the check and share ice cream and cake with the youngsters from Uganda and Haiti who were awaiting operations.
Mrs. Evans has also maintained links with families at the Nicklaus Children’s Hospital in Miami, where Nolan spent much of his young life.
“I know how hard it is for these babies to go through what my son went through; it is so stressful for the parents and the kids.”
Mrs. Evans is still unsure how she survived the ordeal herself.
Just days after Nolan was born, on June 22 last year, she was told he had a rare congenital heart defect, Truncus arteriosus, in which a single blood vessel comes out of the right and left ventricles, instead of the normal two vessels.
He was flown to Miami where he had open-heart surgery to save his life. His parents were told there was no cure for the defect and he would need multiple operations throughout his life.
“They told us he was a very high-risk baby,” his mother said. “They gave me hope but they said his case was very complex.”
Mrs. Evans spent months at his bedside, at times with her family, at times on her own, as Nolan’s condition fluctuated through numerous medical procedures.
“Only a person who has kids can understand the pain I was in, I thought I was going to die,” she said.
In November, Nolan was stable enough to return to the Cayman Islands.
But he suffered a cardiac arrest on Jan. 16. Though his parents, who had trained in CPR, were able to save him, he was flown to Miami for further treatment and died on Jan. 25.
In a written memorial, Nolan’s father said the family was thankful for the “small miracles” they experienced together.
Mr. Evans said watching him sleep in his own crib at their family home, taking him to see the ocean and going to their favorite restaurant together as a family, were treasured moments they never thought they would see.
Mrs. Evans said, “I’m proud to be his mother and to have been there by his bedside until his last breath, giving him my love. He is worth all the grief that has been my reality, and I will love him forever.”
As she seeks to come to terms with her loss, she wants other parents and expectant mothers to be aware of the threats posed by congenital heart defects.
Though Nolan’s case was particularly complex, other heart defects can be mitigated if they are spotted early enough.
Like many mothers, she said, she was excited about the arrival of her son, and unaware of the potential complications and the questions she could ask.
“Something like this can be spotted on an ultrasound, but it wasn’t in this case,” she said.
Mrs. Evans wants to pass on the knowledge and empathy she has acquired during her ordeal.
“I am really planning to do a lot of fundraising for the Cayman Heart Fund and Have a Heart Foundation,” she said. “I feel associated with these kids and their families and want to do whatever I can to help.”
The family are in the early stages of planning a party and fundraiser on Nolan’s first birthday, later this year.
St. Ignatius Catholic School is also holding a “civvy day” fundraiser on April 13, where students donate money to come to school in their regular clothes, for the Cayman Heart Fund and Have a Heart Cayman Islands in honor of Nolan.