A Journey of Strength and Love: Jeri Kelley’s Trisomy 13 Story

Introduction

When a parent receives an unexpected medical diagnosis for their child, their world changes in an instant. For Jeri Kelley, that moment arrived when she learned that her daughter, Zoey Kelley, had Full Trisomy 13. What followed was a journey of overwhelming emotions, challenges, triumphs, and an unbreakable bond with her child. This is Jeri’s story—a testament to resilience, love, and hope.

The Diagnosis: A Heartbreaking Revelation

Jeri recalls the day she received Zoey’s Trisomy 13 diagnosis vividly. “I sobbed pretty hard. I was scared and sad and couldn’t even talk about it at first,” she shared. 

“This was my welcome to parenthood. We had a blood test done at 10 or 11 weeks just to find out gender, not expecting anything to be found. I was impatient. So at 12 or 13 weeks we got the call that we were having a girl and that there was a 25% chance she had trisomy 13, an extra chromosome 13. I was told this comes with many complications such as heart defects, extra limbs, etc and usually fatal if I was lucky enough to carry to term or if she lived a week let alone a year. So I sobbed. I was so sad, and I felt guilty for being sad. I didn’t want Zoey to feel my sadness and take it on herself as a form of rejection. Eventually I turned my tears into prayers of hope, faith and even pleading with God for the doctors to be wrong. I was encouraged by medical staff to terminate the pregnancy but this wasn’t an option for my husband and I. We believed in a miracle and would love this little life (Zoey means life) as long as God let us have her.”

Like many parents faced with such news, the initial emotions were dominated by fear and uncertainty. Thoughts raced through her mind—how would this affect Zoey’s future? What medical challenges lay ahead? It felt overwhelming, and in that moment, everything changed.

The Birth of Zoey: A Day of Miracles

When the day finally arrived, Zoey’s birth was anything but ordinary. “Zoey’s birth was fast and furious,” Jeri described. 

“We weren’t prepared. We tried to be but our best efforts to plan failed. We had just interviewed a dula and a few days later (before we could hire her or even coordinate anything) I ended up in the hospital with preeclampsia. Long story short I had to be induced out of risk for my life as my blood pressure kept rising. Ultimately I was able to have a natural birth (with epidural!) though they had me deliver Zoey in the OR because there were a lot of people at this party (their words). They had every medical team imaginable standing by to snatch Zoey and run. My dignity was gone. But after about 3 hours of pushing, Zoey was out and I got to hold her (I had to sternly advocate for this) while my husband cut her umbilical cord. My husband, Aaron followed as a team of doctors quickly rushed her into the next room while I laid there, what felt like alone, to be cleaned up. But then I heard the most beautiful sound – Zoey crying! Aaron recorded it but he didn’t realize I heard her in the adjoining room. Zoey was alive! And she was breathing room air!!! Our prayers had been answered. Our girl was already a miracle and still today proves many predictions wrong.”

There was little time to process what was happening. The anticipation, fear, and excitement culminated in a moment that she would never forget. Despite the initial concerns, Zoey arrived with a strength that defied expectations. The emotions of that day were a mix of joy, relief, and an ever-present worry about what was to come.

The Evolution of Perspective: From Fear to Strength

Jeri’s understanding of Trisomy 13 transformed over time. “I thought trisomy was a death sentence,” she admitted. 

“ I thought it was filled with sadness and despair. But I was ignorant of what I had never experienced. Zoey fills us with delight! She has a smile that lights up a room. She is adorable and adored by people all over the world. And she has taught me more about what really matters – love and kindness – than anything I had ever been taught before. She loves and comforts me more than the other way around. The journey is unique and definitely not the easiest but it is so rewarding. Managing her care is another full time job; and sometimes supply companies fail us or there isn’t enough time in the day for all the calls or appointments, and we have had nurses walk out on us and say nasty things to us, BUT we have also been embraced by a beautiful community of medical parents and truly amazing private nurses and exceptional doctors who make us feel so loved and cared for. We have a tribe of friends and family and nurses and doctors who cheer us on and who truly love Zoey and love us and love her healthy little brother like their own. We are blessed!” 

However, as days turned into weeks and weeks into months, her perspective shifted. While the journey was undoubtedly challenging, she discovered an unexpected source of strength within herself and in Zoey.

She learned to embrace the moments—each smile, each milestone, each precious second spent together. Though the road was difficult, the love she shared with Zoey made every challenge worth it.

Finding Support in Unexpected Places

Navigating life as a trisomy parent was not something Jeri had to do alone. The NICU became an unexpected place of support and hope. “We were given the most wonderful neonatologist who respected our wishes, helped us understand Zoey’s needs, and gave us invaluable guidance,” she said. 

“Everything from validating parking to food to getting us on a medicaid waiver and connecting us to the Director (at that time) of SKIP of NY – a medical mom who knew what to do. Our social worker sat with me for hours some days as I cried, wondering if we would ever make it out of the NICU season. But the best thing she did for us was connect us to that mom who knew what to do. We got a PA and interviewed nurses and Zoey got stronger and we came home as a family. And our lovely social worker still checks on us from time to time and so does that mom. They were gifts from God.”

“Another moment I will never forget came a few days after Zoey was born. We walked into her NICU room that morning and for the first time we saw Zoey dressed in a swaddle and cute bow tie and she looked so pretty. She had been given back her dignity! It really meant a lot to me to see her all dolled up. Her NICU nurse did that for us. I remember it well because it was also the morning we got the official genetic test results that confirmed my worst fear (at that time). And as I cried and asked for another test, that same NICU nurse embraced me. Even though she was never assigned to Zoey again (she was only filling in on our unit that day), she regularly visited us and checked in on our girl. We are still in touch to this day.”

These medical professionals became lifelines, providing not just medical care, but also emotional reassurance.

The trisomy community also played a significant role in her journey. Connecting with other parents who understood the struggles and triumphs firsthand gave her strength. She learned from their experiences, gained insights, and found comfort in knowing she was not alone.

Words of Wisdom for New Parents

For parents who have just received a trisomy diagnosis, Jeri offers heartfelt advice: “At first, I was too upset to talk to anyone about it. But I wish I had known sooner that this journey, while difficult, is also full of love and moments that will take your breath away.”

“Just some close friends who would pray. But I didn’t find anything positive online when I mistakenly googled Trisomy 13 while I was pregnant. It was all doom and gloom and my fragile heart couldn’t handle that. I wish I had joined the trisomy facebook groups earlier because the best thing I did in those 4.5 months in the NICU was to flood myself with hope. I had to stay positive. Each day was a gift and a sign of strength. I had a friend who had her kindergarten class each make Zoey a handmade card of prayers for her. I plastered her NICU wall with these prayers after I read each and every one out loud to Zoey. It helped me personally to focus on the miracles and avoid fear. But I wish I joined the facebook community earlier. But I did when I was ready. Now, I love seeing someone’s 18th birthday celebrations, or a video of a trisomy13 girl standing up and taking cookies out of the cookie jar and eating them after SCHOOL. I could have seen so many positive stories earlier which would have helped my heart tremendously.”

She wants parents to know that while the diagnosis can feel devastating, their child’s life has meaning and joy. The journey may be unpredictable, but it is also filled with deep, unbreakable love.

Conclusion: A Story of Unwavering Love

Jeri Kelley’s story is one of perseverance and unconditional love. Though the road she walks with Zoey has been challenging, it has also been incredibly rewarding. Through the tears, the fears, and the unknowns, she has found strength she never knew she had. And most importantly, she has found an immeasurable love that continues to guide her every step of the way.

For any parent facing the diagnosis of Trisomy 13, Jeri’s journey is proof that while the path may be difficult, it is also filled with moments of beauty, resilience, and boundless love.