SIOUX FALLS, S.D. (KELO) — A Sioux Falls family is enjoying their first summer as a family of six after their fourth son Asher joined the family in November.

“He was definitely a surprise,” Mom Gretchen Fjerkenstad said.

When Gretchen and Matt Fjerkenstad broke the news about another baby coming to the family, surprise doesn’t quite cover the feelings their 10, 8 and 6-year-old boys were feeling.

“I was like what!” now 11-year-old Finn said. “I was so surprised I didn’t even know what to say, my face just exploded.”

Once they came to terms with another sibling, everyone had the same thought.

“We were like oh maybe it will be a girl,” dad Matt Fjerkenstad said.

But baby Asher came home exactly like their three other baby boys.

“We left the hospital he was jaundiced, but all of our babies had been jaundiced so we weren’t concerned about it,” Gretchen said.

But unlike his three older brothers, Asher’s time on the biliblanket did nothing to help his numbers go down.

“It was actually Thanksgiving morning, we had lab work done, when we got the results back it had shot up off the charts, the doctor on call was like, we don’t know why this is happening, but you need to go to the ER,” Gretchen said.

At 10 days old, the once healthy Asher was now struggling in the pediatric ICU with no answers as to why.

“The ER is where they started calling him an anomaly; they didn’t know what was wrong with him. That was really scary to hear,” Gretchen said.

“I came into see him in our ICU the morning after he had been admitted,” Sanford Pediatric Gastroenterologist Brock Doubledee said.

Dr. Doubledee first discovered Asher’s unlikely diagnosis.

“I got a look at his labs and it was very clear that he was in acute liver failure. Very unusual to be in that degree of liver failure at that age,” Dr. Doubledee said.

After many tests, doctors still don’t know why his liver failed so soon in life, but the next step to save Asher was clear.

“The decision was made pretty quickly to send him for a liver transplant,” Dr. Doubledee said.

“He devastated me in that moment,” Gretchen said. “Knowing we’d have to be separated from our family, but he also saved his life in that moment.”

Gretchen and Asher were airlifted to Omaha for the very specialized procedure. Originally they had planned to send him to Minneapolis, but the hospital there was overflowing with covid patients at the time.

“There are not a lot of pediatric transplant centers in the country, probably 20,” Dr. Doubledee said.

At first, the team in Omaha had hoped to find a living donor for baby Asher.

“That’s when we put the APB out on social media being like, hey, do you have type O blood? That blew up,” Matt and Gretchen said. “We would get messaged from Alaska, North Carolina, Florida, Texas.”

“I went through the process of being a liver donor, they said you’re too big, your liver is too big,” Matt said.

It only took a few days for the transplant team to realize that a living donor would not work for little 8 pound Asher.

“They said we’re going to have to stop, we’re going to have to wait for someone his size because he’s so small. Which would mean a deceased donor,” Gretchen said. “They put him priority 1A, which is top of the list in the nation.”

It only took 5 days from the time baby Asher arrived in Omaha until it was time to hand him over to the surgical team for his transplant.

“I kept asking is this the youngest you’ve ever had?” Matt said.

“I think he was 16 days old when he got his transplant,” Dr. Doubledee said. “Very young, very very young.”

Since 1987 when the United Network for Organ Sharing began recording transplant data, only 88 babies thirty days or younger have had a liver transplant. In 2021, Asher was one of just two babies in the whole country to have the procedure.

“He is very far and away the youngest transplant patient that I’ve got,” Dr. Doubledee said.

Since his transplant in early December, Baby Asher has grown much stronger.

“He’s done wonderfully well. The transplant success numbers in kids that are less than a month in age are actually a very high success rate, because their body hasn’t developed a full immune system yet,” Dr. Doubledee said.

“He gets six meds every morning,” Matt said.

But starting life out with a transplant comes with some life long complications.

“He’ll be on medication for the rest of his life,” Gretchen said. “We have to keep him protected as far as the sun because he’s on immunosuppressants. He’s also at a higher risk for all kinds of cancer.”

His lowered immune system also means increased danger from everyday illnesses.

“We all got stomach flu back in April…the kind that goes through everyone in the family,” Gretchen said. “But with him, it turned into a trip down to Omaha because his numbers went crazy. He had to do biopsies and it turned into this huge thing, like a typical stomach flu. And it might be the rest of his life. Every time he gets a bad virus it’s just more complicated….when you have three other kids living in the house, we can’t shield him from everything.”

While he’s certainly brought a lot of change to their lives, especially during their three months living as a family in Omaha’s Ronald McDonald House during the height of covid cases.

“That made it really hard because we had to just stay in our room with our boys,” Matt said.

“Thanksgiving was in the hospital, my son’s birthday was in the hospital, my birthday was in the hospital, Christmas, New Years, we had gone through all of these celebrations in the hospital,” Gretchen said.

The Fjerkenstad boys clearly still adore their baby brother.

“He’s so cute, I think I’m his favorite brother, anytime I walk in the room or he sees me he smiles,” Finn said.

They say every day they get with their now healthy, growing baby boy is a gift that came with a high price.

“The first anniversary of his transplant is also one family’s anniversary that they’re going to be mourning this year. I think that will be bittersweet every year,” Gretchen said.

But they hope to one day connect with the family who chose to donate life, even through the loss of their own child, giving the gift of continued joy to this Sioux Falls family.

“For us, he’s like our happy hope, he is a very joyful baby, but just spreading the message of hope, that even when things are really dark, there’s always a way to hope,” Gretchen said.

While Asher ended up needing a younger deceased donor, many life-saving liver transplants are done using a living donor. Visit the UNOS website to see how anyone can sign up to help others experiencing the same acute liver failure who are still waiting on their life-saving donation.