Shout My Story recently released another video, this time profiling Sajjona, a five-year-old girl living with Trisomy 18, and how she was almost left to die solely due to her disability.
Sajjona’s mother, Heidi, conceived at age 48 — and while the news was unexpected, the whole family was “very, very excited, very happy.” And then at Heidi’s first prenatal appointment, they received unexpected news.
“[The doctor said] ‘There’s something wrong with your baby,'” Heidi recalled. “‘I don’t know what it is. It could be Down syndrome, it could be Trisomy 18, or another trisomy.’”
Suddenly, Heidi and her husband felt their excitement crumbling around them. “We were devastated and we absolutely both just cried, because everything changed,” she said. “The whole future of the child has changed.” The doctor then told them they should get an abortion, because they deserved a “good life.”
But Heidi and her husband, while sad about their baby’s potential medical issues, were unwavering in their commitment to protect their preborn child’s life. “God put this baby here for a reason, and we’re going to have this baby,” Heidi said she responded. “We will love her for exactly who she is.”
Because Heidi and her husband opted against prenatal testing after the doctor’s original declaration, they didn’t have an official Trisomy 18 diagnosis when Sajjona was born. The medical staff at first cared for Sajjona as they would any other sick newborn. “They worked as hard as they could on her, thinking she was just a child with a disability, maybe, but they didn’t know what [disability],” Heidi said.
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But things changed after a family meeting, when they received the official Trisomy 18 diagnosis. Heidi described the change in Sajjona’s treatment as, “basically there was a black cloud over Sajjona’s bed, and she was pushed in a corner because ‘that was the baby that was gonna die.’”
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.”
Heidi and many other horrified parents have learned that without the parents’ knowledge or consent, health care teams can place Do Not Resuscitate (DNR) orders in the medical charts of very ill children deemed “incompatible with life” — which Shout My Story founder Cynthia Morales points out “is not a medical diagnosis.”
Morales previously told Live Action News that the “standard medical care for kids with severe, life-limiting syndromes is to let them die” if medical emergencies arise after birth, even though “some of these babies can live for years if they’re given proper medical care.”
Consequently, Heidi and her family now advocate for the passage of Simon’s Law in every state, which specifies that medical staff cannot put DNR orders or other medical orders withholding life-sustaining treatments — which could include surgeries, IV hydration or other nutrition, medications, and oxygen or airway management — in children’s medical charts without parental knowledge or consent.
Fortunately, Sajjona survived that initial hospital stay.
“There’s not a typical day for Sajjona, because we’re very energetic, outgoing people, and Sajjona enjoys her life,” Heidi said. “She loves swimming, she goes to the park. She has homeschool friends. She goes to amusement parks. She loves to jump in a jump trainer, she does walk in a gait trainer. She can open her hands. And she says words, she says ‘mama,’ she says ‘dada.’”
Sajjona has motivated Heidi to assist other parents in advocating for their own children with profound medical needs.
“God has a purpose for Sajjona’s life, and one of those purposes is that she’s helping other children,” Heidi said, explaining how one little girl she knew of was refused heart surgery in California due to her complex medical case. But Heidi urged the family to seek a second opinion, and “she got a transfer, she went to Nebraska. She got the heart surgery done. She is now four years old, going to be five in February. And if she’d stayed in California, she would not be here. And that’s just one of the people Sajjona saved.”