Trisomy 13 is a genetic condition similar to Down syndrome, in which the child has an extra chromosome. While Down syndrome — or Trisomy 21 — has an extra copy of the 21st chromosome, Trisomy 13 is an extra copy of the 13th, and it is considered to be a life-limiting condition. One Pennsylvania family was given a prenatal diagnosis of Trisomy 13, and refused pressure from doctors to have an abortion. Now, they are keeping their son’s memory alive with efforts to give back to others.
Kiara Bollinger was given the diagnosis at three months pregnant, and in the worst possible way. Her son, Evan, was said to be “incompatible with life,” and doctors pressured her to have an abortion.
“Our first doctor was so, so cold and unfeeling in giving us the diagnosis,” she said in an interview with Pregnancy Help News. “She said two sentences about what she thought was wrong and then offered us an abortion.” The Bollinger family sought another doctor, who seemed kinder at first — but that quickly changed.
“As it became apparent we would not be terminating the pregnancy, the doctors seemed to get frustrated with us,” she said. “On our third doctor switch, I decided they were all like that and I needed thicker skin and to assert myself. I advocated for myself and my son’s rights.”
Later in the pregnancy, Bollinger went into what she thought was preterm labor, so she went to the emergency room, where she faced more negative attitudes. “The on-call OB/GYN looked at my chart and immediately said to me, ‘You know what its life expectancy is, right? Do you even want us to put it on the monitor?’” she recalled, adding, “If I had chosen to terminate our pregnancy, at no point would a doctor been able to say they thought it was wrong. I hate the double standard.”
READ: Mom of baby with Trisomy 13: I have ‘gratitude for being chosen to be Gabrielle’s mother’
On January 7, 2019, Evan Bollinger was born, and the family was prepared to cherish every moment they had with him. They even frequently played the song “Simple Man” by Lynyrd Skynyrd to him — a song Bollinger had often played to him while she was pregnant. “When Evan was born, we played his song during labor and every day in the NICU several times a day,” she said. “I believe he did know the song. He would move his feet and sometimes grip our fingers when we played it.”
Evan lived for one week, and the family spent time with him, including big sister Sara. They held him when they could, read him stories, and soaked up every moment. “What I wanted for my son, from the moment of his diagnosis, was for him to know that no matter what, we love him,” she said. “We made every day count from that moment just in case. Evan knew we loved him.”
After Evan’s death, the Bollingers got involved with trying to pass Simon’s Law, named for Simon Crosier, who was born with Trisomy 18, and like Evan, was labeled as “incompatible with life.” This meant that Simon was given a “do-not-resuscitate” order without his parents’ knowledge or approval, and was given only the minimum amount of food and medication for what doctors dubbed “comfort.” This accelerated Simon’s death at just three months old. Simon’s Law seeks to protect parental rights when it comes to making medical decisions for children. The Bollingers take this personally, as Evan was denied a heart transplant solely because of his Trisomy 13 diagnosis.
Today, the Bollingers keep Evan’s memory alive through the Be Kind for Evan Bollinger project. The family performs random acts of kindness, both big and small, in Evan’s memory. Their projects have included a backpack giveaway, a toy drive, collecting baby items for a pregnancy center, and forming a support group for infant loss. And Bollinger wants to make sure her son’s life is remembered.
“Tomorrow is never promised to any of us,” Bollinger said. “Evan was special. I believe he was a gift to me and my family. He was cherished and adored. Every moment with him was amazing. My life is better for having my son, even if he didn’t live long. I wouldn’t have it any other way.”
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