The story of Mari Joanne Thielges

Updated: Nov 17, 2020

When we promised to hold you forever sweet girl, we didn't know that meant holding you forever in our hearts.

“Every time we had a negative test, we felt a little bit more defeated, over and over again,” Kelsey Thielges said. “I got in the shower that morning after I took the test, and I didn't think anything of it because all my tests were negative.”

A positive pregnancy test can set off a whirlwind of emotions for any first-time parent: joy, surprise, excitement, anxiety. But when you have tried to conceive for more than 18 months, a few more emotions enter the mix: elation, relief, complete and utter amazement.

When Kelsey stepped out of the shower, the test sitting on the counter revealed the one word she had waited years to see: pregnant.

All those dreams of onesies, cribs, and little baby feet came flooding back to her. She’d imagined so many elaborate ways she would tell her husband, Casey, that they were finally pregnant.

“Instead, I just screamed,” Kelsey recalled. “He came running in and said, ‘You’ve got to be more careful in the shower.’ I just was standing there holding the test and we were just so happy. It felt like we had done it. We were pregnant.”

A Perfect Pregnancy

The first three months of Kelsey’s pregnancy were textbook perfect. Aside from the usual morning sickness, Kelsey had no symptoms—no reason to believe that anything could be wrong.

Kelsey’s 20 week appointment was scheduled for early August 2018. It was a milestone they’d long awaited: this would be their first opportunity to take home a good, clear picture to share the news with their friends and extended families.

“It was a day we had marked on our calendars for quite some time,” Casey said.

The appointment began as normal. The ultrasound technician turned the screen to face them, and for the first time, Kelsey and Casey could see their baby’s head, its abdomen, its tiny little feet. For the first time, it felt real—they were going to have a baby in a few months.

But Kelsey could see that baby was not moving. The ultrasound technician asked Kelsey to stand up, move around, and try to get the baby to flip so she could photograph the spine.

“She left for a second and I think I did jumping jacks, some squats, and laid back down. She came in and took a few more images and said, ‘Okay, you'll go up and see your OB.’ And we went.”

As they walked to meet the OB, Kelsey tried to push the negative thoughts from her mind. But as soon as they entered the room, she knew something was wrong. The nurse did not check her weight or test her blood pressure; she simply asked Kelsey and Casey to sit down.

The doctor explained to Kelsey and Casey that there was something unusual with the ultrasound picture. He pointed to the screen: there was fluid around the baby’s heart, lungs, belly, and spine.

“There was fluid essentially everywhere. I think at that point I still had a little hope that we could do something. And then he asked the ultrasound tech to move to the head,” Kelsey said. “And that's when he pointed out with a pen that there was what's called a cystic hygroma, a fluid-filled sac, on the back of our baby's neck that was about twice the size of the head.”

Then, they heard the last two words that any parent wants to hear.

“We heard ‘I'm sorry,’” Kelsey said. “‘Your baby has a 20 percent chance of making it to term and less than a one percent chance of living if it does.’ And then I think I just broke into a million pieces.”

The Butterfly Blanket

A genetic test was performed to determine the cause of the abnormalities in the baby's body, and four days later, the Thielgeses received their answer: their baby had Turner’s Syndrome, a condition that affects only females and results when one of the X chromosomes is missing or partially missing. In some cases, women can live completely normal lives with Turner’s syndrome; in others, like theirs, the defect can be fatal.

The Thielgeses had a decision to make: they could either terminate the pregnancy or continue to carry their baby, knowing she would not live. After days of discussing, praying, and weighing the risks, they decided to continue with the pregnancy.

Kelsey’s medical team determined that she should come in for weekly ultrasounds.

“It was at our first scheduled ultrasound that we went in and I laid on the table and the ultrasound tech put the jelly on and within seconds, our little baby girl was on the screen, except this time you could see that there was no heartbeat,” Kelsey said. “I remember turning to Casey and saying, ‘I think she’s gone.’”

Kelsey was induced that day, and on August 17th, 2018, Mari Joanne Thielges was born silent at 23 weeks gestation.

After the nurses had taken Mari to clean her up and take prints of her hands and feet, they brought her back swaddled in a purple butterfly blanket. That butterfly blanket brought more comfort, promise, and calm than any hugs, well wishes, or words could hold.

“My grandma passed away when I was about 12 and butterflies have always been a symbol that I see and I think of her,” Kelsey said. “I had just an overwhelming sense of calm that we had made the right Grandma had her.”

Kelsey and Casey were able to spend twelve hours with Mari. While the amount of fluid in Mari’s body had distorted some of her features, her parents could still recognize the telltale Thielges feet, with a space between her first two toes, and Kelsey’s distinctive upper lip.

“As much as she maybe didn't look exactly like we imagined, she was perfect and she was ours,” Kelsey said.

Love Out Loud

Those days were the darkest of Kelsey and Casey’s lives.

In the two years that have passed since Mari’s birth, they have been able to find joy in having her. They celebrate her birthday with a butterfly release every year, and carry Mari with them everywhere they go.

“As traumatic as it was, it was also really incredible,” Kelsey said. “Mari made me a mom, and I don't want that fact to be lost.”

And for as long as it took to get pregnant with Mari, her little brother, Jack, made his appearance shortly after.

“We had joked with our OB at my six week appointment, she just said, ‘You can't get pregnant.’ And then I called two weeks later, I was like, ‘Surprise!’” Kelsey said. “But I never felt safe. I never felt like it was going to be okay with Jack. I was constantly waiting for the shoe to drop.”

Hopeful Heart Project walked with Kelsey and Casey through their second pregnancy, providing a safe place to share their excitement and their fear. And since Jack entered the world a happy, healthy little boy, we have continued to walk together through their grief.

Through Hopeful Heart Project, Kelsey and Casey have found an outlet to love Mari out loud, to honor her memory, and to share those memories with Jack as he grows. They have formed a community of families who can grieve, celebrate, and walk the long path to healing together.

“Hopeful Heart Project created a safe space for our community, our families that are navigating life without their children,” Kelsey said. “It allows us to have a voice, to be able to share our memories and share our experience. And I think just having that network of others who can relate is one of the strongest support systems you can have.”

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