Parents Make Heartbreaking Call to Stop CPR on 14-Month-Old: 'Our Little Boy Was No Longer There' (Exclusive)

"It hasn't been easy being a mom and dealing with grief ... I struggle with the question of 'How many kids do you have?' " Morgan Christofferson tells PEOPLE

  • The mom of a 14-month-old with a congenital heart defect is opening up about the difficult decision to tell doctors not to continue performing CPR on her child

  • Morgan Christofferson has told her story on TikTok and, in an exclusive interview with PEOPLE, opens up about her late child, Soren, and the grief accompanying his death

  • Morgan tells PEOPLE how she's working to keep Soren's memory alive

A couple who had to make the difficult decision to tell doctors to halt CPR on their young child are opening up about watching their "worst nightmare play out."

Morgan Christofferson and her husband Cody Christofferson found out they were pregnant in June 2021.

"Soren was my first child and Cody's second child," Morgan, 27, tells PEOPLE in an exclusive interview. "My pregnancy was very easy from the beginning, with minimal to no pregnancy symptoms. Ever since our first ultrasound, the doctors always commented on how strong of a heartbeat he had."

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But things changed during what Morgan thought would be a routine ultrasound at 20 weeks.

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Bloom Photography The Christofferson children holding a photo of Soren

Bloom Photography

The Christofferson children holding a photo of Soren

"I thought it was odd when the ultrasound tech spent a lot of time taking pictures of his heart but being my first kid, I thought it was routine. It wasn't until the ultrasound tech excused herself from the room that I knew something was wrong," she says, adding, "having a medical background I knew it wasn't normal for a tech to leave during the middle of an exam."

The couple — who live in Dundas, Minn. — were told their baby had a heart defect, one that would eventually be diagnosed as "Pulmonary Atresia with VSD and MAPCAs."

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"In more simple terms, his pulmonary artery (which carries blood to the lungs to be oxygenated) never formed," Morgan explains, adding that the baby also had a hole in the bottom ventricles of his heart and extra arteries coming from his aorta to his lungs.

"One thing they told us at every visit was, 'Remember, we don't know if you will ever be able to bring a baby home,' " Morgan says. " 'Once we cut the umbilical cord he may not be able to breathe on his own.' They didn't have much information about this heart defect as they don't see it often."

Bloom Photography Morgan Christofferson and husband Cody Christofferson with their kids

Bloom Photography

Morgan Christofferson and husband Cody Christofferson with their kids

On Feb. 7, 2022, baby Soren was born — surprising doctors and medical staff by breathing on his own without the help of oxygen.

"Besides his heart, he was a perfectly healthy baby boy," Morgan says. "We spent two weeks in [a children's hospital] after he was born before coming home."

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Once home, the couple took Soren to frequent doctor appointments, with cardiologists telling them that the goal was to have Soren reach 6 months old before they would operate on his heart.

"Soren did amazing. He was growing, drinking his bottles, and hitting all his milestones. He made it to 6 months old and he went in for reconstructive surgery," she says.

Soren came out of the eight-hour surgery and doctors told the couple that everything had gone well.

"They put in a fake pulmonary artery. Cut all his MAPCAs [major aortopulmonary collateral arteries] off his aorta and sewed them together and connected them from his new pulmonary artery to his lungs and closed the hole in the bottom of his heart," Morgan says.

Soren spent three weeks recovering in the hospital before being released to go home. "He was doing great until 12 months old," Morgan says. That's when she and her husband noticed he had "stopped hitting his milestones and his hands and feet were always blue."

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On March 15, 2023, they noticed that Soren's foot and face were swollen.

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"I called his cardiologist and they told us to bring him in. After doing an echocardiogram, they diagnosed him with complete right-sided heart failure and admitted us," she says.

The first two days in the hospital were spent with Soren undergoing MRIs, blood work and multiple ultrasounds.

"They determined that he would need a heart cath done so they could get a better look at what was going on inside his heart," she says.

As Cody and Morgan were sitting in Soren's hospital room while he underwent surgery, the doctor walked in and shut the door — "our hearts sank," she says.

"She told us Soren had coded and they were performing CPR on him as we spoke. We begged the doctor to do everything they could to save him and she told us that they were hooking him up to ECMO," a life-support treatment that temporarily takes over the function of the heart and lungs for patients whose own organs are too sick or weak.

After spending three nights next to his bed, the couple moved into the Ronald McDonald House. Soren, meanwhile, remained hooked up to the ECMO machine for 21 days, and underwent open-heart surgery.

"After being on ECMO for 21 days they were able to get him off it and he was doing great," Morgan says.

Bloom Photography Morgan Christofferson and husband Cody Christofferson posing with their kids

Bloom Photography

Morgan Christofferson and husband Cody Christofferson posing with their kids

But on Easter Sunday 2023, the couple got a call at 5 o'clock in the morning.

"It was Soren's nurse and all she said was, 'Soren coded, you better get up here.' We ran down the hall and got up to his floor to see our worst nightmare play out in front of us," she says. "There were doctors and nurses and cords and medications laying everywhere. The doctor came up to us and said, 'We were able to get him back but if he codes again do you want us to do CPR again?' "

Neither Morgan nor Cody knew what to say, with the doctor telling them to take their time to make a decision and visit Soren in the meantime.

"We walked up to him and kissed him and told him we loved him," she says. "Right after saying that, they were pushing us away as he was coding again. As Cody and I stood in the hallway watching as the nurses performed CPR on our son we looked at each and knew our little boy was no longer there."

She continues: "We made the decision right then and there to stop CPR. As we sat there holding our son for the last time, there was not a dry eye in that hospital room. Every nurse and doctor cried with us."

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Since Soren's death, the couple has kept his memory alive — even after welcoming a new member of the family, Rowen, born three months later.

Still, Morgan admits it has not been easy.

"A week after Soren passed, Cody and I found an amazing therapist in our hometown that specializes in grief. We started a memorial garden in our yard for him with a bench swing and flowers. We also went and saw a psychic medium in our hometown ... and she told us that the guy who owned the land around us wanted to sell it to us for a good deal after everything that happened. We spoke to him and he did — so we bought more land and named it Soaring Acres in memory of Soren."

Morgan adds that she also makes time for herself, "to do things I enjoy," while she continues to work through the grief.

"I really enjoy planting flowers and having a garden so I make time to do those things," she says. On the anniversary of his death, they planted a fruit tree on their property, "in the memory of him," Morgan says, and had family come for dinner, "talking about him and remembering him."

She continues: "It hasn't been easy being a mom and dealing with grief ... I struggle with the question of 'How many kids do you have?' Do I tell them about Soren or do I leave him out?"

"There isn't a day where I don't think, 'I wonder what life would be like if Soren was still here.' I see Rowen hit milestones and think, 'Oh my gosh, I'm so proud of you,' and then realize Soren will never get to do that," she adds.

Soon, the couple — who has three children: Brayden, 13, Rowen, 16 months, and Soren, forever 14 months old — will welcome a fourth child.

"We believe Soren always knew he wasn't going to be here long," Morgan says. "He was a lover and we feel like his purpose was to teach us how to love even deeper — and he did just that."

Read the original article on People