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‘The Savior covers this’: Woman’s newfound LDS faith provides perspective after losing son to trisomy 18

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Sue Butterworth was pregnant with her first child when she heard a nurse utter six heartbreaking words: “Your son is incompatible with life.”

The nurse gave the Butterworths two options: terminate the pregnancy with an early abortion or Butterworth could carry the baby as long as possible, hoping he would survive until birth.

Walter, her unborn son, was diagnosed with Trisomy 18, a genetic defect that can entail many complications, including organs that develop outside of the body, in the wrong place or not at all. The baby is weak throughout the entire pregnancy and usually passes away.

Walter did eventually pass away, leaving his parents to mourn him. Sue Butterworth, a convert to The Church of Jesus Christ of Latter-day Saints, started a photo project to help cope with the pain, continually relying on her Savior and her husband for support.

Butterworth will never forget the standard doctor's appointment when she received the startling news of her son's diagnosis.

A blood test conducted during the checkup included a genetic screening,

“So we just went ahead and did it, without any expectations of getting the results that we got,” she said.

The baby had been flagged for the genetic disorder.

As Butterworth waited for further tests to come back, she researched Trisomy 18 online, finding some grim statistics.

According to Trisomy18.org, only around 10 percent of babies with the disorder live until their first birthdays. Butterworth learned that the baby might not survive until birth, but decided to continue to carry him anyway.

“My husband Dallin and I decided if we have even two minutes with our son, we’re going to take the chance and carry him as long as we can,” Butterworth said. “That’s all we hoped for. All we hoped for was just a minute or two minutes of him just taking a breath.”

Walter progressed toward birth. His organs developed inside his body, which was good, but the lining that separated his belly from his chest was not developed. Everything from his belly was pushed up, squishing his heart and making him weaker.

“Everything was kind of just a big jigsaw puzzle,” said Butterworth. “Everything just kind of shifted and moved.”

Despite Walter’s poor condition, the Butterworths held onto the hope of meeting their son.

“We just had so much faith that everything was going to work out, so we just went along with the pregnancy and didn’t second-guess ourselves, because we knew what we wanted," she said.

Despite being concerned about the welfare of her son, Butterworth said there was never a moment she didn’t rely on the Savior, and this faith led her to an easier pregnancy.

“I’ve never been pregnant before, this was my first child, and in many ways, it was such an easy pregnancy because it felt like I was comforted throughout the whole thing,” said Butterworth. “I had that confirmation like ‘He has this, and it’s going to be hard, but we’re going to get through this.’ Kind of that whisper from Heavenly Father. I learned to listen to that more often than I listen to the outside voices that were going on like, ‘This is severe,’ or ‘He’s incompatible with life’ or things like that.”

This strong faith in the Savior started to develop early in Butterworth’s life, but underwent a significant change when she converted to The Church of Jesus Christ of Latter-day Saints after being raised Catholic. She had several Mormon friends in high school and, after attending seminary, Butterworth wanted to be baptized. Her parents did not approve of this decision but Butterworth resolved to get baptized after she turned 18.

However, before she was able to be baptized, young Butterworth experienced loss in multiple forms. Her young cousin passed away suddenly from a brain aneurysm, her father was diagnosed with a rare bone disease, two uncles passed away and she moved away from home all in the same year. Butterworth put her interest in the gospel on the back burner and fell into a deep depression.

Butterworth felt she needed to do something to help herself out of the despair she was in.

“I knew that the depression was something that I couldn’t run away from at that point, so I started to pray,” said Butterworth. “And I started looking for a Bible in my apartment. I didn’t find a Bible, but I did find a Book of Mormon, oddly enough.”

Butterworth made a pact with God. “I was like, OK, I have seen missionaries walk up and down the street,” said Butterworth. “If I happen to run straight on into a missionary, that is when I’ll start taking lessons again.”

As she was leaving for work one day, two missionaries were right at the bottom of the stairs to her apartment. She said, “It was like Heavenly Father saying, ‘You know, you asked for it, here it is.’”

Butterworth was baptized about a month later, on March 8, 2014.

One of the tenets of the gospel that really spoke to Butterworth was the plan of salvation. When Butterworth was baptized into the LDS faith, she adopted the belief that babies are pure and do not require baptism to be saved until reaching the age of accountability.

She had no idea upon learning this doctrine that it would soon carry a deep significance in her life.

It was three years to the day from her baptism, March 8, 2017, when Butterworth couldn’t find little Walter’s heartbeat with a doppler at home.

The week before, a nurse noticed that Walter’s heart rate was not fluctuating normally and advised that Butterworth be induced soon, so they could meet their son alive. They weren’t going to make it to term. They were one month away.

Butterworth met her husband at the hospital.

“The nurse couldn’t find his heartbeat,” said Butterworth. “They said, 'there’s no fetal cardiovascular movement' or something fancy like that, but immediately I knew, it was just crushing. We were doing everything we could to meet our son, and nothing could help the inevitable, that he had already passed. And it was really heartbreaking for both my husband and I.”

Butterworth knew the Savior had a hand in her life, and she said his Atonement gave her strength after she lost Walter.

“The Savior covers this,” she said. “And it’s not the Savior’s fault that this is happening, it’s just part of the plan, it’s part of Walter’s eternal plan, and I had full confidence that I could lean on the Savior in all of this.”

“Just having the faith that I have, that Walter is safe, that he’s perfect and Heavenly Father and Christ are watching over him right now, it’s a sweet feeling,” she said.

Butterworth has started to deal with the pain by using her photography to open a dialogue about child loss. The Empty Photo Project features the stories of women who have lost children through miscarriage, adoption, stillbirth and other ways. She said she wants people to face grief, to see what it looks like and to learn about it.

“The feeling of empty doesn’t have to have a sad ending, sometimes it could mean hope, sometimes it can mean a new beginning,” said Butterworth. “I love to think that my trial wasn’t for nothing, that even with my project alone, The Empty Project, that people will be able to see you can make it through it, and that there’s others that are there that can help you through it, including Christ. That’s just my only hope with all of this, is that people can feel hope, in the end.”

His little face changed the way I see the world. He didn’t open his eyes. He didn’t make a sound. He was peacefully...

Posted by Susana Vidrio Butterworth on Monday, March 13, 2017