Trisomy 18 often can be a death sentence for a baby. The chromosomal disorder can be fatal on its own, but families often face pressure to abort unborn babies with the condition, too.
But one little girl’s story is showing there is hope for children with Trisomy 18 and other special needs.
Sajjona Murphy, age 5, enjoys swimming, visiting friends and going to the park. Her mother, Heidi, told Shout My Story that the little girl enjoys life despite her medical problems, Live Action News reports.
“There’s not a typical day for Sajjona, because we’re very energetic, outgoing people, and Sajjona enjoys her life,” Heidi Murphy said.
Before and after Sajjona was born, however, her parents had to fight for their daughter’s life.
Heidi Murphy became pregnant with her daughter unexpectedly at age 48, but felt “very, very excited” and “happy” to be having a child, according to the report.
At her first prenatal appointment, however, doctors told her and her husband that there was something wrong with their baby.
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“‘I don’t know what it is. It could be Down syndrome, it could be Trisomy 18, or another trisomy,’” she remembered the doctor telling them. “We were devastated and we absolutely both just cried because everything changed.”
The doctor advised them to have an abortion, but the Murphys refused.
“God put this baby here for a reason, and we’re going to have this baby,” Heidi said. “We will love her for exactly who she is.”
After Sajjona was born, doctors confirmed that she had Trisomy 18, which causes severe developmental problems, heart defects and other issues, according to the report. Sometimes the condition is fatal, but children like Bella Santorum, the daughter of former U.S. Sen. Rick Santorum, live with it for many years. Bella celebrated her 14th birthday in May.
In Sajjona’s case, her mother said the hospital staff began to treat her differently after her diagnosis was confirmed. Here’s more from the report:
Heidi recalled one harrowing moment when Sajjona’s pulse oximetry (oxygen saturation) reading dropped to just 5%, whereas 95-100% is normal in a newborn. Though little Sajjona was clearly in distress and her skin changed color, the nurse caring for her refused to intervene, telling Heidi unconcernedly, “She’s like this all the time.”
But Heidi saw the change in her daughter and recognized, “She went stiff and changed to a color. She almost died.”
Later, the Murphys learned that some hospitals place do not resuscitate (DNR) orders on children’s medical charts without telling their parents, according to the report.
Now, they share their daughter’s story to advocate for laws that require parental involvement in DNR orders. They also raise awareness to help other families of children with disabilities advocate for their children’s medical care.
Heidi Murphy said she knows her daughter’s story has helped to save other children’s lives.
“God has a purpose for Sajjona’s life, and one of those purposes is that she’s helping other children,” she said.