Thrive by IU Health

August 16, 2023

A mother dedicates her life to spreading awareness of Trisomy 18

IU Health Ball Memorial Hospital

A mother dedicates her life to spreading awareness of Trisomy 18

At the beginning of the pregnancy, everything seemed normal. Amanda Cragun went in for her standard anatomy scan thinking everything was fine. She had gone through the process once before, giving birth to her healthy baby girl, Kynslee. But three weeks after the appointment, she received a call from her doctor. She needed to find a specialist as soon as possible.

“When we finally got the ultrasound results back, the doctors could tell there was something going on, they just weren’t sure exactly what,” says Cragun. They initially thought she was missing a stomach and could tell other things were going wrong. She and her family went to the Riley Children’s Hospital in Indianapolis for additional testing.

From the tests, they were able to detect Kamdyn, their not-yet-born daughter, had two equally large Choroid Plexus cysts in her brain. It’s common for only one side to have a large cyst, not both. She also had a healed VSD in her heart. They were able to confirm she had a stomach. “I remembered thinking we had a good chance, that my daughter would be okay” says Cragun. But then, the Riley doctors were able to establish a 99% chance that Kamdyn had Trisomy 18.

Trisomy 18 is a condition when there are three copies of the 18th chromosome. Many people are familiar with Trisomy 21, Down Syndrome, which is three copies of the 21st chromosome. “The chances of having Trisomy 18 are completely random, and it is typically incompatible with life.” Says Cragun. “However, I had a few friends and saw on social media kids and adults with Trisomy 18. During the majority of the pregnancy, I really thought everything was going to be okay, at least for several months.”

After the diagnosis, the family moved from Riley to IU Health Ball to be closer to home. They received care and created a birthing plan with Joseph Landwehr, MD, and Sarah Porter, NP, FNP-C. “I loved Dr. Landwehr,” says Cragun. “I felt so well cared for and listened too.”

Every week, Cragun went in for an ultrasound. “They were constantly checking to make sure she was still growing, and she was, just very slowly,” says Cragun. “I had started the grieving process because I knew at some point, I was going to lose her. The doctors offered early termination options, but I wanted to give her the best chance at life. I wanted Kamdyn to tell her story, because what if she could end up being one of those fortunate to live with Trisomy 18. I didn’t want to get in the way of my daughter.”

On March 10, 2021, Cragun went into labor. She had an extremely low Bishop score, meaning her likelihood of a successful induction was low, and her labor lasted 36 hours. Kamdyn arrived quickly once Cragun was fully dilated. “When it was time, I knew shew was coming out, and there was no stopping her.” Says Cragun. Kamdyn was born at 4am on March 11 at only three pounds, 14 ounces.

When she came out, she wasn’t breathing. Cragun wanted to avoid the ventilator knowing it would be too hard to take her off. Her doctors accommodated this request and decided to give her oxygen. At birth, they knew only three things for sure. Her hands were clenched, she had rocker bottom (club feet) and she was extremely small. “We honestly thought she had a good chance of making it at least six months,” says Cragun. “My goal was to take her home.”

Because the family wanted to spend as much time with Kamdyn as possible, Kamdyn did not stay in the Neonatal Intensive Care Unit like most babies born under five pounds. Instead, the team cared for her in the family’s room. “That’s why I love IU Health Ball, the staff was so compassionate and willing to support us through every step of this.” Says Cragun. “I want others to know that communication is so important. Your team needs to know what you need, that’s why they are there. If they’re not doing what Dr. Landwehr and Porter did for me, then that’s not who you want on your care team. Make sure you are advocating for yourself and for your baby.”

After 24 hours, the family took Kamdyn home with the nasogastric tube and oxygen. The doctor had been straightforward telling the family that she was struggling to breathe, and they wouldn’t have much time left with her. Cragun says, “I liked how straight to the point all of the doctors were. We already knew the situation wasn’t great, so by not sugarcoating it, we stayed within reality.”

Cragun woke up every two hours to feed Kamdyn. At 2:30 in the morning, Cragun’s mother woke Cragun up having noticed Kamdyn was not doing well. The whole family gathered in the living room to watch over Kamdyn as her heart made its final beat. “Her heart stopped beating, and we looked at the clock and it was 3:18am, the number associated with Trisomy 18 for the three chromosomes,” says Cragun.

While Cragun stayed on maternity leave, she continued to grieve her daughter. She bought a digital art pad and started designing. Two and a half years later, the family has started a non-profit, Courage for Kamdyn and Kamdyn’s Beehive Inc. The non-profit raises funds by selling the art Cragun makes. “I began by drawing faceless portraits, sticker designs and bracelets that incorporates a bee for Kamdyn,” says Cragun. Now they sell everything from t-shirts to puzzles as well.

Recent stickers designed by Cragun to raise funds for Kamdyn's Beehive

“Bumblebees aerodynamically shouldn’t be able to fly because they are too heavy for the size of their wings,” says Cragun. “The legend goes that bees shouldn’t fly, but they don’t know that, so they go on flying anyway. It reminds me of how Kamdyn wasn’t supposed to live, but she didn’t know it, so she was born anyway.”

The nonprofit supports families in understanding a child’s life-limiting diagnosis. They send a book to families with a life limiting diagnosis and Trisomy babies called, “Just In Case You Ever Wonder” by Max Lucado. It was the book the Cragun family would read to Kamdyn in the womb. It goes, “just in case you ever wonder…this is the story about you.” They also send birthday presents, Christmas gifts and engraved cards to other families going through what the Cragun family went through.

Nurses holding donated books from Kamdyn's Beehive

“I want people to understand the joy that we found in meeting Kamdyn,” says Cragun. “There was a lot of pain in losing my child, but I also was able to have some closure by being able to meet her. Today, I want to provide other families with support by sending birthday, Christmas, Mother’s Day and Father’s Day gifts to families with a child loss. I also want them to know I am a friend and resource for them.”

Kamdyn’s Beehive on TikTok and Facebook spreads awareness, love and uplifts other parents going through a similar situation by sharing Kamdyn’s story. Cragun is working to build a community for Trisomy babies and their families. “By giving back, I feel that I can continue Kamdyn’s legacy which in turn, helps me through my own grieving process,” says Cragun.

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