Embracing Love and Hope: Sara Chappell’s Journey with Nora

Introduction

The journey of parenthood is full of surprises, but for Sara Chappell, the birth of her daughter, Nora, brought an entirely unexpected and deeply transformative experience. Diagnosed with Full Trisomy 13, Nora’s life, though brief, was a powerful testament to love, hope, and the beauty of every moment shared. This is Sara’s story of resilience, unconditional love, and the impact of a strong community.

An Unexpected Diagnosis

Sara and her family had chosen to forgo prenatal testing with all their pregnancies, wanting to welcome each child without the weight of anticipation. When Nora was born, they were initially overwhelmed by the unexpected diagnosis of Full Trisomy 13. The emotions were complex—shock, worry, and uncertainty filled the air. Yet, alongside those emotions was an unshakable love. From the very beginning, Nora was deeply cherished. Below are some of the excerpts of her narrative:

“We refused all pre-natal testing (NIPT) with all 3 of our children so we did not have a prenatal diagnosis for Nora. I am so thankful for this since I had a wonderful pregnancy full of love and excitement instead of the fear and dread I commonly witness for families who find out ahead of time. When Nora was born, we had about 20-30 minutes of “ignorance” before we realized something could potentially be very wrong. She was born on a Saturday and we did not get the FISH genetics results until Tuesday or Wednesday of the following week. But, by then, we had already googled her characteristics and had a very good idea that she had T13/Patau Syndrome.

The geneticist who first gave us the news was very cold and offered zero hope. She stated that the only T13 child she had ever seen that lived past a few weeks was a vegetable. Her first question to us was if there was any chance that my husband and I were distantly related. She then said that because Nora was so “good looking” (her words) that it would be potentially harder for us to say goodbye since we would bond more with her than if she had more significant physical abnormalities. Overall, the experience was horrific. We knew going into the meeting that she was going to tell us Nora had a serious condition, but the way in which she explained it to us was incredibly harsh and hurtful.”

The Precious Hours with Nora

Nora’s arrival into the world was swift and smooth—her birth, an easy labor, bringing with it an indescribable sense of joy. She was beautiful, delicate, and deeply loved from the very first breath. The Chappell family was gifted with 36 unforgettable hours with Nora—36 hours filled with endless love, warmth, and the profound realization of how precious time truly is. 

“Nora was a super quick and easy labor. She was petite when born, but no immediate flags were raised as I had been very “small” carrying her. As I mentioned in the previous question, we did not know about her diagnosis. That day still haunts me because we never got the “new happy family” picture of the 3 of us. Nora was our first baby and I wanted so badly to have the standard mom holding the baby in the hospital bed with the new dad right next to their photo experience. I think we each have one picture of us holding Nora and smiling before the pictures cut to us holding her having been visibly crying. This was a vastly different “first baby” experience than either of us had expected”, she expressed. 

She further added “I am so thankful that we have 1000’s+ of other HAPPY pictures of us with Nora. Her spirit always shined through her laugh and smile and I wanted to capture every one”. Those moments became a lifetime’s worth of memories, imprinted in their hearts forever.

The Evolution of a Journey

At first, the journey felt incredibly frightening. Nearly every medical professional they encountered had a grim outlook on Nora’s future. But Sara and her family chose to embrace love and hope rather than fear. The hardest part was knowing that their time together would be limited, but the immense love they shared far outweighed the sadness. Nora’s presence, even in such a short span of time, left an impact that would last a lifetime. This how she narrates it:

“At first everything was very scary. Every medical event was a “first” and we had to learn how to calmly and confidently handle things the first year. Over time, my husband (Jerry) and I feel into a “hospital” routine/schedule and we were a very well oiled machine. Nora’s challenges required immense organization and time management skills. We had to learn how to advocate for her, juggle all appointments and hospitalizations all while keeping up a normal household for our other 2 children. I think the busy-ness made it less scary. We simply did not have time to worry and fret and had to keep marching forward.

I think the hardest part of our journey was our lack of nursing coverage. We did not have a single week where all of our hours were staffed. We were always ready for someone to not show up for a shift or to quit without even telling us. I was constantly trying to recruit nurses for our case and became the de-facto recruiting arm of our agency. It was time consuming and very frustrating. The lack of nursing made normal work schedules so difficult. While we tried very hard to include Nora in everything in our lives, there were events that were simply not appropriate for her. For example, a loud indoor basketball game, a cold baseball game with a 7:30 pm start time, a trip to a trampoline park with no handicap access. These were all things that our neuro-typical kids were involved in and, if we did not have a nurse to help, we would have to split up and have one parent stay home.

The most rewarding part of the journey was seeing Nora laugh and smile. She was the sweetest, most loving human on the planet and she radiated joy. Everyone who met her was touched by her spirit and it was amazing to see how she changed perceptions of teachers, nurses, physicians, therapists and other parents who were given a prenatal diagnosis. I loved nothing more than to show her off to anyone who had previously given us a negative prognosis. Nora never complained, she hardly ever cried, she was the strongest person I know and I learned more about myself and the world than I ever could have imagined.”

Finding Strength in Community

As Sara navigated life as a trisomy parent, she found solace and guidance in the support of others. Two incredible individuals played a crucial role in helping her find resources and direction. Additionally, the SOFT (Support Organization for Trisomy) community provided a wealth of understanding and comfort. Connecting with parents who had walked a similar path reminded Sara that she was not alone in this journey. She explicitly explained:

“I credit 2 people who helped us kick start our advocacy journey for Nora. I also credit Facebook.

1) Lanise Shortell – Lanise was our hospice nurse. The hospital where Nora was born had a futility policy and basically strong armed us into a DNR for Nora and railroaded us into leaving on hospice. They instructed us to take her home, love on her and let her pass. Lanise was waiting in our driveway when we got home from the hospital. I hated Lanise initially — she represented everything that was the exact opposite of how I thought bringing my new child home would be. But, Lanise is a FIERCE proponent of concurrent care. She made sure to explain that even though Nora was receiving hospice support, we did NOT have to sit idle and watch her pass. She urged us to get a full cardiology consult and pursue open heart surgery for Nora to correct her heart defects. I know that Nora would never have lived 11+ years if we had not corrected her cardiac defects. Nora was in hospice for 2 years before they lovingly “kicked her out” for thriving. Lanise remains a close friend of our family to this day.

2) Barb Farlow — Barb is famous in the trisomy world. Her unwavering commitment to righting the wrongs of Annie’s short life has helped so many other kids live. Barb helped me find my advocacy voice early on and guided us to push for things in Nora’s care plan that might have been overlooked had we not pushed for them (with Barb’s guidance). We had the privledge of flying to Boston with Nora to meet Barb and Dr. Annie Janvier when Nora was about 15 months old.

3) Facebook – there is no doubt that the exposure to 100’s of thriving kids and parents all over the world helped me in advocating for Nora. Medical Moms are a force to be reckoned with. There were countless times when we suggested something to Nora’s doctors because it had worked for other trisomy kids and we pushed to have them try it for Nora. After we felt like we had the “hang” of a trisomy diagnosis, the “Special Needs Parents of Georgia” FB group helped us advocate locally for everything from school related issues, DME, Katie Beckett waiver support, nursing challenges, etc. It was amazing to have a group of parents locally who banded together to help each other even though our kids had different needs/challenges.”

A Message to Other Parents

Looking back, Sara wishes she had known about the abundant support available from the very beginning. Her message to other parents facing a trisomy diagnosis is clear: Congratulations! Your child is a precious gift, worthy of boundless love and celebration. The journey will not always be easy, but it will be filled with moments that carry profound meaning and joy. Embrace every second, and know that there is an entire community ready to walk alongside you. This is her actual encouraging words for parents:

“I would first and foremost say CONGRATULATIONS to any new parent. It’s a word we never heard after she was born. Everyone went into this somber, hush/hush mode and became very apologetic for her condition and her life. Whenever I speak with someone who has either just given birth, or just found out they are pregnant with a trisomy child, I always make sure to give them a very big congrats and ask the baby’s name. I don’t recall any of the doctors in the NICU using Nora’s name. Everything was very clinical and exacting. We were first time parents and desperately wanted to bond with our new daughter. I want people to understand that the journey is NOT easy, but somehow you will make it through. Nora taught us tenacity, resiliency, toughness. She taught us an incredible amount of love and kindness. She taught me how to be a mom (she was my first). I am so thankful that we connected with the support network and the physician team early in Nora’s journey. We pushed to fix everything we could in Nora’s little body. I have ZERO regrets in pursuing full and appropriate medical intervention. I want other families to know that this journey is so worth it and I am thankful that I don’t have to look back and say “what – if.”

Closing Thoughts

Sara Chappell’s journey with Nora is a story of love, resilience, and the power of embracing each moment with an open heart. While the time they had together was brief, its impact was immeasurable. Through the strength of love and the support of a compassionate community, Sara found the courage to celebrate Nora’s life rather than mourn its brevity. Her story serves as an inspiration to all who find themselves on a similar path, reminding them that even in the face of uncertainty, love will always be the guiding light.