One in a billion. Those are the odds for an extremely rare chromosomal deletion syndrome called 1q43-1q44. And when Abby Heasley's baby girl, Hattie Blake, started turning blue, the first-time mom knew something was seriously wrong. She just never imagined it would be this extreme.
Life changed forever for Abby Heasley in May of 2017 on the day her beautiful daughter was born. After a fairly routine pregnancy and delivery, Hattie Blake, her baby girl, was finally here. And Abby and her husband, David, couldn't have been any happier.
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Little Hattie battled jaundice and a few respiratory episodes while in the hospital. But as Abby headed home with her sweet girl, she thought the worst was behind them. She had no way of knowing that part of what made Hattie Blake so special was the one in a billion odds her birth defied.
Life as a new mom came with sleepless nights, but Abby Heasley didn't mind. She and David cherished every second with their sweet baby girl, Hattie.
But just before some family friends arrived for a visit, Abby's gut told her something was wrong.
Hattie simply didn't look right. And moments later, the baby girl had started turning blue. Nothing Abby did seemed to rouse her.
"She was limp, almost lifeless. I yelled for my husband and we called 911," Abby recalls. "Less than 5 minutes later, our house was filled with paramedics and police officers. I watched in fear as they loaded my tiny 1-month old baby girl into the ambulance."
As scary as the experience was, nothing could prepare Abby and David Heasley for what doctors discovered next.
They found that Hattie Blake Heasley suffered a chromosomal deletion syndrome so rare, there are only 55 known reported cases in the whole world.
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Hattie is missing part of her 1st chromosome at bands 1q43 and 1q44. The odds are so slim -- one in a billion -- this particular form lacks a formal name and is simply called "1q43q44 Chromosomal Deletion Syndrome". The symptoms can include seizures, brain malformations, microcephaly and apnea but really there aren't enough cases to be sure what to expect.
The baby girl's family could focus on the negative. But while the diagnosis carries plenty of challenges and concerns, the faithful family maintains an optimistic perspective.
"Hattie was one in a billion," Abby says, "so we basically won the lottery with her."
Perhaps the most terrifying part of Hattie Blake's diagnosis is that with such limited cases, doctors still don't really know what impact it will have on the sweet girl's future.
"Hattie seemed completely normal to us," Abby Heasley said. "She was all we knew because we were first-time parents. And her diagnosis was so rare, they couldn’t possibly tell us what her future would look like. When you are told this type of news, the future is all you can think about."
While at the Children's Hospital learning about Hattie's diagnosis, friends and family came to pray with Abby and David. And as the couple headed home with their one-in-a-billion baby girl and thousands of questions of what her life would look like, they realized their only hope was to surrender to God.
"Trying to predict Hattie's future is impossible, and that's where our faith in the Lord has really helped us," Abby explains. "We know that God is the ONLY one that knows what Hattie's future is going to look like. We just have to continue to be loving and supportive parents, and trust in Him."
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Rather than worry over Hattie's special needs, Abby says, "We’ve quickly learned to live in the now and to focus on today, rather than tomorrow. Tomorrow will worry about itself."
"Therefore don't be anxious for tomorrow, for tomorrow will be anxious for itself." Matthew 6:34
Because of her chromosomal deletion syndrome, Hattie Blake Heasley does face developmental delays. She's currently non-verbal and in a wheelchair.
But Abby and David Heasley have made a wise decision in regards to their daughter's progress.
"We have learned to avoid the CAN’Ts and focus on all the CANs," Abby says.
Hattie's beautiful smile lights up a room. And her giggles melt hearts all over when her mom shares videos of those precious moments.
Abby and David have since welcomed a second baby girl into the world -- little Shiloh.
"Watching our 2 girls together, is seriously the most amazing thing in the world," Abby says. "Not only do I think Shiloh is going to help Hattie SO much with her development, I also think Hattie will teach Shiloh a lot as well."
Abby has dedicated her time to sharing Hattie's one in a billion story. Not only as a way to inspire others, but to also help raise awareness for rare chromosome deletion syndromes. And it's also a reminder of what incredible warriors special needs children are.
"Hattie has to work so much harder for things that come so easily to most children," Abby says. "Our special needs kiddos have to go through so much."
And what Hattie's story teaches all of us is to appreciate each and every blessing. Usually, the most rewarding journeys in life are those that are most challenging.
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"My motherhood journey might look a little bit different than most," Abby Heasley says, "but I wouldn’t change it for anything"
To keep up with Hattie's progress, be sure to check out Abby's blog, Life With Hattie.
“For you created my inmost being; you knit me together in my mother’s womb. I praise you for I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.” Psalm 139: 13-15
h/t: Cafe Mom
Featured Image: Instagram / Life With Hattie
Mel is the senior writer for GodUpdates, finding, writing and sharing Christian, uplifting, and health-related stories from around the world. Mel has a passion for writing and graduated with a degree in English from Randolph-Macon College in Virginia. When she’s not researching and writing stories, Mel is very active in her church. You can usually find Mel playing board games with her husband and two young girls, giving someone a hug, or hunting down a good cup of coffee!