In October of 2019, Nick and Adelynn Stanton were excited to announce they were pregnant with their fourth child. Then in December, they learned the doctors had concerns about the baby’s heart. In January, they were told their baby girl had Down syndrome. Their reaction isn’t one society is used to seeing — it was one of “relief and joy.”
“Down Syndrome. Handicapped. Special needs. None of those terms will ever define our precious girl,” Adelynn wrote on Facebook on January 3, 2020. “Though we received the news today of her extra special chromosome, our sweet Piper Joy is so much more than a diagnosis. It may sound silly or backwards to some, but when we were told today that our babe has Trisomy 21, Nick and I both let out sighs of relief and wept tears of joy.”
The couple had already been told that their daughter might be stillborn because of other health concerns. To know that her diagnosis was “not something worse” than Down syndrome was a relief to them in that moment. Piper was “growing healthy and strong.” They were full of joy at the thought of raising her alongside her siblings. As a former neonatal and pediatric intensive care nurse, however, Adelynn knew that there was the possibility of a rough road ahead.
Though the couple was joyful, they still had moments when they felt the heavy weight that comes with receiving a diagnosis for your child. Adelynn said that her “heaviest burden to date was placed” on her the day she learned her baby might not be okay, but it wasn’t because her baby had Down syndrome. She explained:
This burden isn’t heavy simply because my daughter has Down syndrome. It’s not heavy because she will be born “different”. Our girl is not a mistake, she’s not an accident, & her extra chromosome does not make her inferior to any other human being on this planet.
⠀
This burden is heavy, rather, because we ADORE her. It’s heavy because I love her so fiercely that my mama heart would do ANYTHING to protect her. It’s heavy because her well-being is completely out of my control. This burden is heavy because well-meaning people make comments like “I’ll be praying for complete healing”, or “I don’t know anyone else who could ever love her the way you will”, or “I truly believe God will fix her & she will be born normal” … as if she’s broken or less than or that a person with an extra chromosome must certainly be impossible to love. ⠀
During the pregnancy, the couple was hit with more news about Piper’s health. They learned she had transient myeloproliferative disease, hydrops, anemia, and leukemia. They began blood transfusions and steroids. The doctors involved in her care had never diagnosed someone as young as Piper with TMD before but it all added up to an unknown outcome. The goal was to make it to 34 weeks to give her the best chance.
READ: Mom pressured to stop treating son with Down syndrome: ‘Make arrangements for his death’
Then in April, Adelynn awoke at two in the morning to heavy bleeding and was taken by ambulance to the hospital. She began to have contractions about every five minutes. The doctors tried to slow the contractions and then put her in an ambulance to a different hospital. The couple wasn’t sure if Piper would be born that day or not, or why Adelynn was bleeding so much, but they felt “maybe that was a mercy from the Lord to get us where we need to be before it’s too late.”
“So please continue to pray for my precious child,” Adelynn wrote in an update from the ambulance. “She has such a long road ahead but we made it to 31 weeks and 5 days, and she received her final round of steroids, so we feel at peace that we have given her the best chance we possibly can.”
Piper was born by C-section. “They told us there was about a zero percent chance she would make it out of the Operating Room,” Nick told WKBW. “When she was born and they got her breathing and we got to look into her eyes and see our girl, we were ecstatic at that point.”
Adelynn explained that Piper was “whisked” away. “[W]hen they came back and told us she was alive — I just remember sobbing.”
Piper had a fight ahead of her. Because of COVID-19 restrictions, her siblings were unable to be at the hospital, and Nick wasn’t able to be there as much as he wanted to be. When doctors said she wasn’t going to hold on much longer, Nick was able to stay with her for 16 hours. “Just holding her, praying for, praying over her, kissing her,” he said. Seven days after she was born, Piper Joy passed away.
“I carried her almost exactly seven months in my womb, and she lived exactly seven days,” said Adelynn. “In the Bible — that’s the number of completeness and perfection. I feel like it was a way for God to speak over us that her life was complete.”
Though still grieving, Adelynn began to feel a nudging from God that the family should adopt a child with Down syndrome. As the months went by, they decided to go for it.
“Every time I told somebody my baby had Down syndrome — they were like, ‘I’m sorry.’ I said, ‘I’m not sorry — have you ever met a child with Down syndrome?’ We want to show the world that these babies — they matter. They’re worth fighting for. They’re a gift,” said Nick.
The couple contacted an adoption agency, who told them that the evening prior a woman had called about finding an adoptive family for her preborn child who had Down syndrome. Adelynn “felt this sense of peace… that this may be the baby the Lord had chosen for us.”
The birth mother chose the Stantons for her baby and the family is now eagerly awaiting the arrival of their future son who is due in January. “It’s not Piper, but his life is so intertwined with Piper’s,” said Nick. “So it will feel complete. Completing this chapter of bringing a baby with Down syndrome into our family.”
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