Isabella VanOrman is a fighter, there is no doubt about it.
Born with Trisomy 18, the chromosomal condition more commonly known as Edward’s Syndrome, there was a 90 percent chance she would never see her first birthday. But at three years old, Isabella has beaten the odds time and time again.
Like many children diagnosed with chromosomal abnormalities, Isabella’s battle began before she was even born. When her 25-week ultrasound took unexpectedly long, her parents Jared and Sabina knew something was wrong.
“They kept going back to her heart,” Sabina said. “They looked at her head, they looked at her feet, but they kept going back to her heart.”
The doctor’s prognosis was not good. In addition to Trisomy 18, Isabella had a two-vessel cord, cysts in her brain and a massive hole in her heart. The VanOrmans were told that their daughter’s condition was incompatible with life and were encouraged to terminate. When they refused to even consider an abortion, their doctor pressured them to sign the forms just in case they changed their minds. Again, they refused.
Jared and Sabina chose that day to fight for Isabella and the family never looked back.
“I told the doctor, if she dies in five minutes, five hours, or inside of me it didn’t matter; we were going to fight for her,” Sabina said.
The initial part of that fight was learning about Isabella’s condition and finding doctors willing to look past the Trisomy 18 and treat her as they would any other child. They found help through Facebook support groups and were able to answer the only question that mattered: “If you take the chromosome out of the equation, can she live? The answer was yes,” Sabina said.
Isabella must get her fighting spirit from her parents. For more than three years now, they have refused to take “no” for an answer and have had to fight with an unwilling medical community to treat their daughter. The VanOrmans fought for weekly prenatal check-ups to monitor Isabella’s health. They fought for a scheduled early delivery, for surgeries to help Isabella breath, and fought for their daughter to receive a much-needed pulmonary artery band—the first Trisomy 18 patient to ever receive one at the Helen Devos Children’s Hospital in Grand Rapids.
After three years, the fight is still not over. Isabella is still in need of a heart surgery and has ongoing problems with breathing and allergies, but her parents are not giving up.
“I’m going to protect my kid, because that is what you do,” Sabina said.
Unfortunately, most families facing prenatal diagnoses like Isabella’s choose not to fight. Instead, they choose to end the lives of their children in the womb, or succumb to pressure from doctors telling them to give up.
It is a disturbing reality that so many children with treatable conditions are thrown away at the recommendation of medical professionals. Isabella is proof that doctors can be wrong and that children with Trisomy 18 and other chromosomal conditions can thrive, if only given the chance.
So, what advice do the VanOrman’s have for parents facing difficult prenatal diagnoses?
“Research and follow your heart, they are worth fighting for,” Sabina said.
Indeed, every life is worth fighting for; Isabella is worth fighting for.