This essay is a personal account of Emily Martin’s journey toward becoming a parent and the heartbreaking loss of her daughter, who was diagnosed with Turner’s Syndrome.

Turner’s Syndrome (TS) is a genetic condition that affects females and occurs when one of the X chromosomes is either missing or partially missing. This can lead to various health problems and developmental issues, such as heart defects, short stature, infertility, and learning difficulties. Unfortunately, there is no cure for Turner’s Syndrome, and the survival rate of affected fetuses in the womb is less than 2%. However, many individuals with Turner’s Syndrome can lead fulfilling lives with early diagnosis and appropriate medical care.

This essay is shared to shed light on the difficult journey of pregnancy and infant loss and to provide hope and healing to those who may be going through a similar experience. The author shares her personal story of losing their daughter Madelyn Grace (Madi) and how they found strength and comfort in their faith, their loved ones, and the support of organizations like Kennedy’s Angel Gowns. By sharing their story, they hope to bring awareness to this often-silent struggle and help others find their path to healing.

Butterflies: A Symbol of Hope and Healing Through Pregnancy Loss

On May 28^th, 2022, I said “I do” to the kindest, most selfless, and most supportive man I have ever met. Ethan and I prayed to have as many children as God would allow us to. Therefore, we embraced the “we’re not trying, but we’re not NOT trying either” approach after getting married. A month into marriage, we discovered we were expecting a little gift from God!

Let’s get back to our baby! The day before our honeymoon is the day we found out we were expecting. During our honeymoon, Ethan and I visited a butterfly pavilion, which turned out to be the highlight of our trip. Ethan couldn’t contain his excitement and shared with everyone we met on our honeymoon that I was pregnant. We both felt so elated and couldn’t wait to share the news with our family and friends once we returned home, so we did just that. Even before we went to the doctor, Ethan had an intuition that our baby was a girl, and I felt the same way too. It’s incredible how quickly parental intuition sets in.

At eight weeks, we had our usual ultrasound, and the doctors mentioned that our baby’s heart rate was slightly higher than usual. However, they reassured us that it would come down as time passed, and being first-time parents, we didn’t overthink it. At 10 weeks, I underwent the Non-Invasive Prenatal Testing (NIPT) test. I only wanted the test to determine the gender for our gender reveal party. I dreamt day and night about that party.

The NIPT test is a blood test that can screen for specific chromosomal abnormalities in a developing fetus, such as Down syndrome, trisomy 13, and trisomy 18. The test analyzes DNA fragments from the placenta in the mother’s bloodstream and can be performed as early as 10 weeks into pregnancy. Unlike invasive procedures such as amniocentesis, the NIPT test is non-invasive and carries no risk of miscarriage.

When we learned about Madelyn Grace’s diagnosis, our world stopped. It felt like an unending nightmare. Despite our initial shock and heartbreak, we refused to lose hope for Madelyn Grace. As a mother, my first instinct was to start researching Turner’s Syndrome. That’s when I discovered that the symbol for TS is a butterfly, which felt like a sign from God. He knew I needed that. After crying for six hours straight, I finally stood up, determined to fight for our daughter. We refused to lose faith, and Ethan and I were committed to doing everything possible.

We had scheduled appointments with the high-risk doctors for Madi Grace every week. They gave us the grim news that our daughter wouldn’t survive each time. They recommended that we terminate the pregnancy at every visit. However, Ethan and I refused to give up hope and continued to pray for our daughter. I can’t tell you how many butterflies we saw everywhere, as did our family and friends during this time.

At our 17-week appointment, we met with heart specialists who confirmed that Madi had two severe heart conditions and wasn’t growing properly. Despite being warned that we would lose her within a week, we still refused to consider termination.

As the 18th week of Madi’s life began, I started to feel her move inside me, and Ethan held my tummy all night so that he could share in the experience. It lifted our spirits and gave us more hope than ever before. But on the 19th week and 6th day, I stopped feeling her move. We had an appointment that day at 3 pm, which I hoped would prove the doctors wrong. However, at 12 pm, I noticed something was wrong, and I began sweating profusely even though I was in a cold classroom. I left work as quickly as I could and rushed to the appointment. Ethan met me there, and we prayed together in the parking lot. I still remember the panic and dread that overwhelmed me, as if someone had shoved cotton into my mouth, making breathing difficult.

At approximately 3:30 pm on October 6th, the devastating news was delivered to us: “I’m sorry there is no heartbeat today.” My desperate pleas for them to check again and tell me they weren’t certain fell on deaf ears. They left the room as I screamed, kicked, and pleaded for my baby. Ethan held me tightly, trying to calm me down as much as possible. As the shock subsided, he began to weep into me, and it hit me like a ton of bricks. This was real, and I could do nothing to change it.

Returning home from the hospital was a foggy experience. We were still processing everything we had just gone through, but there was still more to endure with the funeral. My sister-in-law knew who to contact for Madi’s burial gown. That’s when I first heard of Kennedy’s Angel Gowns. When we received The Angel Box, it was so meaningful, and Madi’s gown was absolutely stunning. I felt a sense of peace knowing she had something special to wear, as I had always dreamed of dressing her up.

Throughout the 42 hours of labor, my mother found comfort in the Butterfly Room at Sentara Norfolk Hospital, which Kennedy’s Angel Gowns created. As for Ethan, he also took refuge in the Butterfly Room while waiting for me during the placenta removal surgery. The room’s name gave them a sense of serenity and comfort during this difficult time. I posted on social media to show appreciation for all that Kennedy’s Angel Gowns had provided for us.

Unexpectedly, Heather reached out to me, and her words deeply impacted me – she understood the depth of my pain. She mentioned the upcoming 5k Angel Run, but I didn’t think I could attend since we hadn’t buried Madi yet. However, I decided to investigate further and learned that the event would end with a butterfly release to honor all the angel babies. I tried to buy a race ticket, but the add-on for the butterfly release was already sold out. I messaged Heather to ask if they were really sold out, and she confirmed it but then unexpectedly said, “You can have mine.” Despite feeling hesitant, I ultimately accepted her offer.

We are dedicated to providing comfort and support to families during their time of loss. Our mission is to honor the precious lives of babies gone too soon by creating beautiful gowns from donated wedding dresses. We hope The Angel Box can bring peace to grieving families and raise awareness of pregnancy and infant loss.

If you have a story of pregnancy or infant loss, we encourage you to share it with us. Your Story can help others who are going through a similar experience, and it can also help raise awareness about this crucial issue. Don’t let the silence consume you; sharing your story can make a difference. Visit our website today to submit Your Story and be a part of a supportive community of women who have traveled the same road. Your voice matters, and we want to hear it.

Please explore our website if you would like to learn more about our organization and how you can support us. We also hold events throughout the year to bring our community together and support bereaved parents. We invite you to join us in this vital work and help us make a difference in the lives of families who have suffered such a profound loss.