Summer and Jimmy Fuller marked their daughter Sophee’s second birthday without her this past June.
Their baby, Sophee, lived 201 days.
While Fuller was pregnant, the couple learned Sophee had trisomy-18, usually a fatal genetic condition, affecting all of the body’s vital systems, she says.
Fuller would not trade one of the days she spent with her daughter. She hopes other families with similar diagnoses will find strength and come to their own decisions.
“I want other people to know that a diagnosis is not a prognosis. I hope that they will make a decision based on what’s right for their family, not what some doctor or the medical community tell them to do,” Fuller says. “We needed all of the 201 days for our family. We were the ones going to have to live with it. No matter what, these boys always lost their sister. I have always lost my daughter.”
The couple have four sons: Anthony, 11; Tadum, 7; Matieu, 5; and Oliver, who had his first birthday this summer, says Summer, who with her family recently moved to Rio Rancho.
She remembers getting a call that Friday night, when she was about 12 weeks pregnant: “They told me she’s a girl, and she’s sick.”
Fuller didn’t want what they said to be true. She hoped they had made a mistake.
“I had to surrender to what was going on,” she says. “The diagnosis was the disease was fatal. They wanted to know what we were going to do.”
The idea of terminating the pregnancy, an option offered to them, sickened the couple:
“We decided to fight for Sophee, if Sophee was willing to fight.”
Her baby, delivered by casarean section, came out crying and breathing, she says.
The couple fought for Sophee when she became distressed, was laboring to breathe and was put on life support.
Sophee finally came home. Because of her fragile medical condition, she lived in an isolated world in Fuller’s bedroom. A hospice team visited the baby and family regularly.
Sophee grew stronger, able to nurse and had started to roll over. Although they had to scrub up and wear gowns and masks, the boys got to play with their sister, Fuller says.
But then Sophee took a turn and developed a respiratory problem. She had surgery and she lived for another month-and-a half, Fuller says.
“I could see it in her eyes. I knew what was coming,” Fuller says. “It was like she was saying, ‘Mom, I’m done.'”
Fuller says Desiree Jones, a professional volunteer photographer with Now I Lay Me Down to Sleep, helped chronicle Sophee’s short life.
“I have a whole collection of photographs. That’s all I have. That’s all we’ll have the rest of forever,” Fuller says. “She was loved. All she ever knew was love. She changed me. She changed a lot of people.”