One Day at a Time: Meredith Willard’s Journey with Rose and Trisomy 18

Introduction

When a parent first hears the words “Trisomy 18,” their world can suddenly feel unfamiliar and overwhelming. For Meredith Willard, learning that her daughter Rose had Full Trisomy 18 was a moment of heartbreak, confusion, and fear. But through the challenges, she found strength in love, support in community, and joy in moments both big and small. Meredith’s story is one of growth, deep connection, and unwavering hope.

Facing the Diagnosis

“When I first heard of Rosie’s diagnosis, I was devastated and terrified of the unknowns.” Meredith had never heard of Trisomy 18 before receiving the diagnosis, and the fear that came with the unknown was paralyzing. In those first moments, it felt like her world had shifted beneath her feet. But even amid fear, Meredith held onto love for her daughter and a resolve to face the journey ahead.

“It was from a screening. I was in shock. It seemed she would either die or the screening was wrong, and this would all go away. I didn’t have any in between. It would be a miracle event and she wouldnt have this or it would be a tragic diagnosis that took her life. I just couldn’t grasp what life would be like with trisomy 18, I didn’t know enough yet. I felt very sad. Some fears that come to mind, were how can I see my baby die. When will we loose her? In the womb or after birth. How will our family be in watching a baby die.”

A Birth Filled with Hope

“When Rosie was born it was a wonderful day. A scary day, but a day of love and hope and support.” Despite the looming medical complexities, Rose’s birth brought joy and hope to Meredith and her family. The fear didn’t vanish, but it was met with the incredible love they felt the moment Rosie arrived. Surrounded by support, the day marked not just the start of a difficult medical journey—but the beginning of an unbreakable bond.

“A care plan and long search for an innovative fair team resulted in a very capable team being there for her and I when she was born. It was amazing to watch the team focus and work with Rosie to ensure she was stable. It was what I wanted more than anything, to try. On her birth day we intervened to save her life, she lived. It was a wonderful day.

At the start of her diagnosis process and my pregnancy with her I was planning that she would pass away at birth. It felt terrible and hopeless but I tried to find ways to bring my love and make a plan, but they shifted quickly and once I knew we wanted full care I planned a day with fair care and it went just as we planed.”

Growing Through the Trisomy Experience

“My perspective on Trisomy went from barely knowing about it to it becoming my entire world.” Meredith quickly went from unfamiliarity to total immersion. The diagnosis became part of daily life, but rather than being defined by fear, the journey became filled with learning, connection, and moments of beauty.

The challenges were many—doctors’ appointments, difficult decisions, and long nights—but so were the rewards. Watching Rosie grow and develop in her own unique way filled Meredith’s heart with pride. Every milestone was celebrated, and every day was embraced as a gift.

“When they first told me Rose was at risk for t18 all I knew of was t21. Down syndrome came to mind and I was very worried that I could have a child that could be vulnerable and have a life long caregiver, lack of independence. I was naive to so much about genetic disorders. I had to learn a lot! As I learned more and more I wanted my child to live and get all the care and support she needed. I became empowered by her need for me to care for her versus weighed down by it .

The most challenging is finding the best care for her.
The most rewarding is watching her grow and thrive once her medical needs are met in an innovative way. It’s also amazing to know how to meet her cares and do her para medical needs myself. To be able to have her home and stable and strong, it’s a dream come true.”

Support and Resources That Mattered Most

“Dr. Marty Macafrey has been a huge resource.” Meredith credits trusted professionals like Dr. Macafrey and supportive friends and family as key pillars in their journey. But one of the most invaluable sources of strength came from the community of other Trisomy families.

Hearing from those who had walked the same road—who truly understood—helped Meredith navigate the emotional highs and lows of parenting a child with Trisomy 18. Those connections gave her guidance and, perhaps more importantly, the reassurance that she wasn’t alone.

“From day one, asking me questions about Rose and providing feedback when I was told things from medical care. A huge reason I found the right paths for Rose was his teaching me and answering questions I had, I could then go challenge unfair care and hold people accountable. I knew what I was asking for and I knew how to advocate as he was a resource for me to learn from.

Dr. Oshiro a periontologist who told me “you need to join soft” at a 20
Week scan and I said I wanted full care for her. I wanted her heart repaired and I would advocate all I can.

Shelly Mueller a genetic counselor who answered my request to find fair care . She helped place Rose and I in fair care.

Anne Barns and the soft team welcoming me. The soft Facebook group.

Nikky Huddleston a mother sharing her daughter Shelby. Her answering my questions and sharing their journey, I learned what steps help save lives of a neonate with t18

Jeannie, a fellow mama of a child with t18. We met online. On a swaddle site post, I learned her child had t18. She later was the one who directed me to Rosie’s heart surgeon. She blazed a trail and is a huge reason Rose is alive.

Dr. Hammel, a heart surgeon. I reached out to Dr. Hammel and shared Rosie’s situation. He and I talked directly, he shared with me that he would repair her heart. We had a few other conversations and then Rosie flew from California to Omaha Nebraska where he repaired her heart four days later. She was 6 weeks old, small and intubated! He operated and she was ready to fly home commercial 6 weeks later, she is now 7 thriving!

She is a testimony to fair and innovative care! She has taken every intervention and thrived! Dr. Hammel told me this, “I have only spent about 4 hours working with your daughter so far, I. Total maybe 40, you will be her caregiver for her whole life. You are the reason she will make it” it really gave me perspective. But I I wish I could now tell him.

You are a huge part of this success, we see Rose as victorious! This is her beautiful life that we celebrate and you are part of the crew, we thank you and we also want to say that your “critical” care may not of been a long time with her, but you gave us this home life with her, her this childhood and we are so grateful. You fixed her heart. Thank you.

Megan Lapinskas a NP who helped us get stellar care from specialties, navigate out patient life and supplies and dme companies that are great. Referred us to programs that pay us to be her caregivers and has become life long friend. She is also a medical parent to a beautiful daughter with cp.

State programs that pay me to be her caregiver, her medi cal, and ample resources in our state. Although heart repair was denied in ca we came back to ample resources.”

Advice to New Parents Facing a Trisomy Diagnosis

“I would tell a parent that they must take this diagnosis one day at a time. Take a deep breath and find the people who will walk this journey with you.”

Meredith’s message is one of compassion and wisdom. She encourages new parents to lean into support, trust in their instincts, and let go of the pressure to have everything figured out. Every child’s path is different, and every moment—no matter how hard—can also be deeply meaningful.

“I would share that this is a very complex and controversial diagnosis. To take time to grieve and feel sad, or defeat or angry. It’s a hard diagnosis to accept, at first. But it’s well worth accepting because your child is amazing! Your Child needs an advocate and care, and this can be you! You can learn things and grow in ways you never knew! It isn’t hopeless or helpless it’s the opposite. This diagnosis needs help and hope. It is my hope you find it! There are resources and supports. There are also very hard, unfair, and stressful parts to being a parent to a complex child. Take care of yourself !

I wish I would have known she is and I are stronger then I thought. And that medical care may not want your child to live, they may find saving her life “unethical” you have to make your own choices for your own child! You have a voice, you are part of the team. You are needed! Make wise choices, do not worry.”

Conclusion

Meredith Willard’s story is one of courage, compassion, and unwavering love for her daughter, Rose. In the face of fear, she chose presence. In the midst of uncertainty, she chose connection. Her journey reminds us that even the most challenging paths can lead to the most profound discoveries about love, resilience, and what it truly means to cherish life—one day at a time.