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Jovie; unisex name of Latin origin. Meaning 'bringer of joy' or 'joyful'.
Jovie, The Very Beginning.
We walked into our 12-week scan, blissfully happy and expectant. We had decided to skip any antenatal testing, opting only for the scan, eager to see our baby for the first time. As we settled in and watched the screen, our baby’s heart beating steadily, relief washed over me. But then the sonographer grew silent, scanning the same area repeatedly. I glanced at Chris, who squeezed my hand tighter. The sonographer finally turned to us and said, “I’m really sorry, but your baby doesn’t have a face.”
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Her words hit like a freight train. Tears welled up in my eyes as Chris asked the questions I couldn’t. Frustratingly, the sonographer couldn’t provide answers, and with no doctor available, we were sent away, told to wait for a new appointment at the city hospital.
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Four agonising days passed, filled with relentless googling of the unfamiliar terms on our scan report. By the time we went in for our next scan, we were petrified. Thankfully, an empathetic fetal medicine specialist and a kind midwife gently explained that our baby likely had a chromosome disorder, pointing towards trisomy 13, 18, or 21—Patau’s, Edwards, or Down Syndrome. They warned that our baby might not survive the pregnancy. Our world crumbled.
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They offered further testing, an amniocentesis, or a termination, but we declined. It didn’t matter what name they gave the condition; we wanted to keep our baby, for however long we were blessed to have it.
We made it to the 20-week scan, eight weeks of constant worry. I had spent too much time on the internet, seeing things I wished I hadn’t, yet also gaining knowledge about these conditions. Stories of other parents described the blessing of having a baby with an extra chromosome, portraying them as extra special. My emotions swung between hope and despair.
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The scan showed our baby was still alive, growing, but also revealed severe complications. It was no longer likely Down Syndrome but a more severe Edwards or Patau’s syndrome, along with holoprosencephaly, microcephaly, cleft lip, and other facial deformities. The doctor, in a gentle tone, informed us that our baby was “incompatible with life” and might not survive much longer. Once again, we were offered further testing and a termination. We were even told that due to the diagnosis, we could terminate up to full term. We refused again.
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Returning home heartbroken, we faced the daunting task of sharing the bad news repeatedly and figuring out how to tell our children they might never meet their new sibling. We set up a private Facebook group to share the news with our large families simultaneously. We named it Jovie’s Journey—Our Special Little Girl. We made it clear we didn’t want sympathy; we were still pregnant and proud of our baby. Our motto became “prepare for the worst, hope for the best, and cherish every memory in between.” We decided to find out the baby’s gender and planned a Facebook live reveal—COVID restrictions forced us to. We were having a girl, our Jovie, named even before conception.
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Weeks turned into months. Despite the constant worry and tears, Jovie held on, showing her strength. Chris and I balanced each other well—he, Mr. Positivity; I, Miss. Worry About Everything. Determined to make the best of any outcome, I packed our hospital bag early, included a special outfit, a blanket, and memory-making kits. We met with an organ donor nurse, funeral directors, and the neonatal team to prepare for every possibility. I started expressing colostrum so she could have the best start if she survived birth. We made sure everyone knew about Jovie.
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Defying all odds, Jovie made it to full term. We chose induction to maintain some control, and she arrived on a weekday, just as the doctors had hoped. I was determined to have the perfect birth, and I did.
Jovie came out breathing on her own, and the first thing I saw was her most beautiful face.
Jovie, Earth Side.
Once home, Jovie continued to defy all odds and living her best life. She had received every diagnosis the doctor said she would, (apart from a trisomy – she had Chromosome 7 deletion instead), but how that looks in a textbook and how that translates into life are two completely different things.
Jovie was certainly compatible with our life and hers, and we felt so blessed by every person who supported us from their own similar situations. They were right, these babies are so very special. Jovie was smashing milestones, sitting up, rolling over and fitting into our family life like it was the only place she was ever meant to be.
With Jovie came a new appreciation for life, and a love like I have never ever felt before. She showed an unbelievable fighting spirit, and continued to impact this world in a way other people can only dream of doing.
Being told from the start that Jovie may not even make it out of the womb alive, every day was a celebration with her and we never took a second for granted. We felt the luckiest family alive to experience a whole year of firsts with Jovie, Easter, Father's Day, Mother's Day, Halloween, Christmas, her siblings birthdays and her very own first birthday. A year we would have never got to experience had we chose to terminate our little girl.
Eleven days after Jovie's birthday, after a short fight with Covid, Jovie's time on Earth was complete. With her Mummy and Daddy by her side Jovie took her final breath. But we won't let her story end there, Jovie was sent to change the world and she will continue to do so for many more lifetimes to come.