Prior Lake baby to undergo heart surgery to repair defect

Prior Lake American

In June, Prior Lake resident Kelsey Ferguson became a mother and a widow in the span of one week.

Now five months old, her son, Maxley, will undergo surgery in mid-December to repair a birth defect in his heart.

“He’s doing great, so they’re able to wait a little bit longer, which is ideal so he’ll be a little bit bigger,” Ferguson said.

Scott

Ferguson and her husband, Scott, met their senior year of college at St. Cloud State University. On March 2016, after six years of dating, the couple married.

Shortly thereafter, they began to try and have a baby. Kelsey suffered a miscarriage in August 2017 but before long was expecting again — albeit with complications.

In June, Kelsey was admitted to Abbott Northwestern Hospital while pregnant for monitoring. Doctors had detected a heart defect and suspected a chromosomal abnormality.

Around the same time, Scott Ferguson began to suffer from coughing, body aches, joint pain and fevers. He tried medication and visited doctors, but the cause remained undiagnosed.

After checking his wife into the hospital, Scott Ferguson went home. He began to have trouble breathing and started coughing up blood. He drove himself to the emergency room before being transferred to Abbott Northwestern Hospital. There, Scott was diagnosed with a form of vasculitis, an autoimmune disease which cause inflammation of blood vessels.

Ferguson continued to struggle to breathe a few days after being admitted into the hospital. Doctors attempted to put him on a lung bypass, which would have a machine regulate the breathing in order to give the lungs a break.

During the surgery, Ferguson went into cardiac arrest. He was resuscitated after 45 minutes, but doctors told his wife they were unable to stop the bleeding in his lungs and that there was nothing else that could be done.

“They wheeled me in to be with Scott,” Kelsey Ferguson wrote on her husband’s CaringBridge page. “In his final moments, I was able to tell him how much I loved him, how much our son loved him, hold his hand, give him a hug and just be with him. It was by far the hardest thing I have ever had to do.”

Scott Ferguson died June 8 at 30 years old.

Maxley

On June 12, four days after his father died and almost six weeks early, Maxley was born. The doctors didn’t know if Maxley would be able to breathe on his own, but there he was — 2 pounds, 4 ounces and crying.

“It was seriously amazing,” Kelsey Ferguson’s sister and Prior Lake resident Codi Breeggemann said. “He was the ray of light in that storm of a week.”

An in-utero test had come back negative for a specific suspected chromosomal abnormality that would have been fatal for Maxley. After he was born, another test showed that he had 12q14 microdeletion syndrome, meaning that a portion of his 12th chromosome is missing.

According to the National Institutes of Health website, those with the syndrome have delayed speech and language development, difficulty gaining weight, wide-set eyes and mild intellectual disabilities.

“We have a lot of specialists we’re working with to try and beat him to the punch to try and help before it’s past time,” Ferguson said.

Maxley was also born with a balanced atrioventricular canal defect. A regular human heart has four chambers, divided by walls, that regulate the oxygenation of blood to and from the lungs. Maxley’s has two chambers.

“The blood flows back and forth between the two chambers,” Ferguson said. “It makes it really difficult for him. His heart just has to work extra hard to pump blood to his extremities. It’s very difficult, it’s a lot of work on his body.”

The defect allows extra blood to flow to the lungs, and the heart becomes overworked, according to the Mayo Clinic. In December, Maxley will have surgery to build the missing wall.

Kelsey

The entire process has not been smooth. Maxley spent 99 days at the Children’s Hospital in Minneapolis. Since he was born, Ferguson has kept friends and family updated with daily posts on his CaringBridge website.

On Sept. 19, Maxley and his mom returned to home to Prior Lake. After two weeks, Ferguson went back to work.

“It’s tough, it’s very tough,” she said. “Being back at work and being a manager and then going home and dealing with a very fussy baby is hard. He does not sleep at night. He doesn’t sleep for usually more than an hour at a time, and then he’s up for a while.”

Ferguson and her husband’s mothers are both living with her at the moment to help take care of Maxley.

“It takes all three of us to tag-team nights and make sure all of us are getting a couple hours of sleep at a time,” Ferguson said.

She said she has received a monumental amount of support from friends, family and the community.

In September, Scott Ferguson’s family and friends hosted a golf tournament in Canada, where he was from. The group plans to host the tournament as an annual benefit for Maxley and his mom. In October, a “Burgies for Fergie” fundraiser, which Breeggemann helped set up, was held at the Prior Lake VFW and raised more than $18,000.

“It’s really hard, because there’s not a lot I can do to make it better,” Breeggemann said. “I’m her oldest sister, and I feel like I’ve been a second mother to her, so I wish I could take her pain away, but I can’t.”

A GoFundMe set up for Kelsey has received almost $44,700 in donations from more than 620 people. Maxley now weighs 8 pounds, 8 ounces and loves being cuddled.

“He is fussy for sure, but when he’s not fussy, he’s smiling, which is an interesting thing,” Kelsey Ferguson said. “He’s pretty happy overall, especially if he’s being held.”

Ferguson said while she is unable to move on from the death of her husband, she’s attempting to keep moving.

“I don’t think there’s a way or ability, but I’m trying,” Kelsey said. “I’ve got to figure it out for Maxley.”

On Monday, she posted a new update to the CaringBridge website.

“Scott never got to meet his son,” she wrote. “I know this to be a fact but sometimes it hits me in these intimate moments that he never got to meet this tiny incredible human we made together. It’s unreal. It’s unfair. It’s a nightmare. It’s my life.”