‘She made more of an impact than a lot of people do in a lifetime’

WASHINGTON, Iowa — For a while, she was still there.

Even connected to a web of wires and tubes, her deep brown eyes projected her friendly but fierce personality.

And then she wasn’t.

And Greta and Blandon Clemons had to allow themselves to think the unthinkable. Carson Grace — their doe-eyed, 7-month-old daughter with a charming mop of black hair — wasn’t going to make it.

“Her body just was done,” Greta told The Gazette. “Everything was failing at that point.”

But Carson’s tiny body — having been diagnosed with complex congenital heart defects in the womb, including dextrocardia, when the heart develops on the right side of the chest instead of the left — had done more than most in its short time.

More than many expected.

“I think they were kind of preparing for her not to make it right away when she came out,” Greta said of Carson’s birth on Sept. 27, 2021. “She very much surprised them with how good she looked.”

Heart was ‘flipped’

Eight months earlier, Greta and Blandon — just over two years into their young marriage and living in Iowa City — learned they were pregnant. And they were delighted.

“We got married, and then wanted to have a couple of years or so just us,” Greta said. “So she came at a good time.”

Raised in Washington, Iowa, Greta — now 30 — landed at Kentucky’s Morehead State University after high school, following a stop at Iowa Western Community College to play softball. Recruited to Morehead State, Greta arrived in Kentucky in 2012.

Blandon, who also went to Morehead State, worked at a grocery store she frequented. So Greta saw him around and one night invited over some of his friends — and he tagged along.

“When he came over that night, he made me take a picture of him and my roommate’s cat and text it to him,” Greta said. “And that’s how he got my phone number.”

The cat’s name was Riley. And Blandon texted Greta right away.

“He wouldn’t stop texting,” she laughed.

Five years later, in 2017, Blandon proposed — and they got married in Iowa City in August 2018.

They both wanted kids. So when Greta surprised him with a positive test in January 2021, “He was pretty shocked.”

“Shocked and excited,” Greta said.

Stress began to creep in at their 12-week appointment, when an ultrasound suggested the baby’s heart was “flipped.”

“But they weren't even 100 percent sure if it was accurate because it was so, so, so small,” Greta said.

So while part of her felt scared, she and Blandon took the optimistic view that even if their baby had dextrocardia, “People have that, people live with it, and it’s fine.”

The following 16-week ultrasound, though — in May of 2021 — blanched their optimism.

“That was the one that we found out how bad it was,” Greta said.

An ultrasound paired with a fetal echocardiogram revealed the baby had dextrocardia and complex single ventricle congenital heart disease with unbalanced atrioventricular canal, malposed great vessels and pulmonary atresia, along with heterotaxy. Essentially, she had severe heart defects — including one in which the valve controlling blood flow from the heart to the lungs didn’t form at all.

“After that appointment, we both got in the car to go home and just cry,” Greta said. “We didn't know what to do.”

Crushing questions entered their minds.

“We also found out at that appointment that it was a girl,” she said. “So we were far enough along that we didn't feel like we could stop things there. We knew this was going to be a tough journey, and we really didn’t know how it was going to go.”

Despite the grief, Carson’s spirit started to charm them — to give them hope.

“We were still excited to meet her and start our family,” Greta said.

'How good she looked’

Those paradoxical feelings paralyzed Greta in what — for many pregnant women — are typically joyful and exciting rites of motherhood passage. Shopping for onesies, monitors, car seats and plush blankets, for example, came with questions and caution.

“I was excited to start buying stuff, but then I also was very hesitant on buying stuff,” she said. “As time went on, they kind of warned us that she might not make it after birth.”

Once when Greta and Blandon found themselves in Old Navy, Greta perused the baby section while Blandon tried on clothes.

“I remember picturing her in all the different outfits and even talking to Blandon, after he was done trying on clothes, on what he would allow her to wear,” she said, as a joke. “I wanted to buy her an outfit so bad, but I couldn't get myself to do it.”

The couple skipped a baby shower, although a few close friends threw her a small surprise one, “which was really nice, actually.”

Baby Carson did really well in Greta’s womb, and both mom and baby had few complications as her due date approached. At 39 weeks and four days, doctors induced — so Carson could be born into a controlled environment.

“When she came out, everybody was prepared,” Greta said about her relatively easy delivery. “They had told us we wouldn’t be able to hold her.”

But Carson Grace — at 6 pounds, 10 ounces and 19 inches long — scored a near perfect “apgar” score, a test given to infants based on their appearance, pulse, grimace reflex, activity and respiration.

“So they actually did let me hold her for a little bit,” Greta said. “We took a couple pictures and spent probably two or three minutes.”

Carson, according to Greta, surprised everyone "with how good she looked and how she acted.”

A few days later, doctors discovered why — following more echos and tests. Carson’s developing body had created tiny arteries to do the job her missing heart valve was supposed to do.

“They’re basically in place of the pulmonary arteries,” Greta said. “They're just really thin little tube-type things that connect together to mimic the pulmonary artery — to pass the blood to the lungs, the body, the heart.”

'Fire in her soul’

Carson’s strong start upended doctors’ post-birth plan. She still needed surgeries to correct the complex problems. But, for a while, Carson got to go home with her mommy and daddy and live a mostly-normal baby existence.

“We had to give her medicine, and she had a feeding tube,” Greta said. “Those were the only baby things that normally you wouldn’t have.”

In her crib next to a wall hanging that read, “She has fire in her soul and grace in her heart,” Carson spent months of peaceful nights under the watchful eye of her parents — and the baby monitor they weren’t sure they’d need.

She posed for newborn photos — with her eyes wide open. She took naps with one fist balled up by her cheek and one arm straight in the air. She liked her pacifier and also her fingers. She stared in wonder at the family cats, Tim and Teagan, who stared right back.

Carson — with her laughs and her cries and her bouncing in the frog-styled jumper — was a dream realized, Greta said, reminiscing about the day at the mall months earlier.

“That day in Old Navy was hard,” she said. “We were so excited and had fun picturing her in outfits. But it also hit home that we may never see her in any of these types of clothes.

“I am so happy we were able to,” Greta said. “And after she was born I remember making a pretty large purchase from Old Navy, including her denim jacket.”

Around November, Carson began experiencing breathing difficulties and ended up at the University of Iowa Stead Family Children’s Hospital again — where they began to discuss surgeries doctors said she’d need for a shot at long-term survival.

Due to the specialized nature of the procedures, UIHC physicians sent Carson’s case to Stanford Health Care in Palo Alto “to see what they’d say.”

“They may say they can’t do anything,” Greta said. “They may say they can.”

In December, Stanford accepted Carson’s case — and the family began planning a trip to California. They arrived in March for a series of procedures and surgeries they expected could keep them there six to eight weeks — a journey Greta’s mom, Krista Smeins, would catalog on social media for a growing thousands of praying friends and family.

Before getting on the plane, Smeins wrote about the unknowns.

“I would be lying if I said we are not really scared and second guessing everything, especially since Carson seems so normal in a lot of ways,” she wrote March 10, but noted the ideal time to operate is when she’s doing well, not when she’s sick.

'They were able to hold her’

Carson underwent her first operation in Palo Alto on March 18, with a plan for more intensive surgeries in the days to come — including one March 22 that lasted 23 hours. Although that surgery went well, doctors discovered during the procedure that Carson had a heart rhythm abnormality.

“That caused her to code after the surgery,” Greta said.

Carson recovered and was intubated on a breathing tube. She also had to go on extracorporeal membrane oxygenation — or ECMO — as life support so her heart and lungs could recover.

Through clear dressing on her open chest, the family watched Carson’s heart beating. And, after about a week, Carson successfully went off ECMO.

The breathing tube was harder, according to Greta.

“They tried two different times to get her off of it, and they couldn't. She just wasn’t handling it,” Greta said.

More tests showed Carson’s pulmonary veins were closing, requiring another surgery. And Carson’s body was unable to recover. Her body was struggling to clot blood and also support blood flow to vital organs.

“It was just not good,” Greta said. “She underwent two major surgeries in two weeks, and her body was basically shutting down.”

Friends and family and people she never met flooded Facebook with prayers and images of lit candles. Although Carson spent a lot of time sedated — with her long dark eyelashes touching her cheeks — she fought to watch her mom and dad and engage with them, even flashing smiles through gauze and tubes and wires.

“When Greta and Blandon are in the room, she wants to constantly track them and make eye contact and gets a bit too riled up with her big leg kicks,” Smeins wrote April 5 on Facebook.

Although mom and dad couldn’t hold her, Blandon did a lot of singing.

“Good afternoon, Miss Carson,” he sang in one video. “We sing to you, Miss Carson.”

She also heard a lot of books and a lot of “I love yous.” And, on May 7, Smeins wrote, “Mother’s Day came early to Lucile Packard Children’s Hospital, and we will be forever grateful to the wonderful group of professionals who made it happen.”

“It has been nearly seven weeks since Greta and Blandon have held Carson,” she wrote in a Facebook post. “Today … They were able to hold her for literally hours, as her numbers were excellent while being held.”

They snapped a family picture, even as Smeins wrote, “We are not sure what going forward will look like.”

Three days later, Greta and Blandon made the impossible decision to let their daughter go.

“There's always hope, especially when looking at her, but there is a point — and probably a lot of parents don't have to experience this — but you can just tell, you just don’t want to put them through it anymore,” Greta said.

The doctors closed up Carson’s chest, as her body couldn’t keep up with her will. And eventually, mom and dad carried her to an outdoor patio, where they covered her in kisses and waited.

“It was just us, a nurse, and a doctor that were out there,” Greta said. “It was very peaceful.”

‘She will live on’

The couple returned to Iowa days later with broken hearts. They were met by a massive network of friends and family who had prayed over their daughter, who didn’t make it as far as they’d hoped but farther than anyone expected.

A month later, on a warm evening in June, Greta and Blandon served themselves pork for dinner from among the pans and Tupperware of food delivered in the weeks since Carson’s death.

And they talked about her legacy. They talked about their future.

“I think she will live on for a really long time,” Greta said. “I think she made more of an impact than a lot of people do in a lifetime.”

Both Greta and Blandon hope to have other kids. Testing showed Carson’s issues weren’t the result of any genetic abnormality.

But, for now, they’ve buried her ashes in a cemetery by their home in Washington, reserving spots for themselves next to her. Across the small pond behind their house, they’ve planted a tree next to a bench next to a plaque of Carson.

Next month, the couple has more intimate memorial plans — using some of her ashes to ink tattoos of her birthday on their wrists.

“We know she was really sick, and we know she's in a better place now,” Greta said. “But we miss her very much.”

Comments: (319) 339-3158; vanessa.miller@thegazette.com