As new baby joined Minn. family, son needed new liver
MOORHEAD--Ever since Erica and Neal Anderson learned she was pregnant with the couple's third child, their 7-year-old son Arlyn could hardly contain his excitement.
MOORHEAD-Ever since Erica and Neal Anderson learned she was pregnant with the couple's third child, their 7-year-old son Arlyn could hardly contain his excitement.
"He's been talking to my belly and singing to my belly," Erica said.
So when her son suddenly became gravely ill and ended up in a Twin Cities hospital in late July, during her 39th week of pregnancy, she decided the baby needed to be born, right away.
"I was so afraid if he didn't make it, he wouldn't have that chance to meet his sister," she said.
The hospital arranged a hurry-up C-section and afterward, Erica and baby were wheeled into Arlyn's hospital room for the long-awaited meeting. The two "have a connection," Erica says.
It was an abrupt change of script for the Andersons, whose focus shifted from baby's birth to saving their son's life.
Arlyn Anderson, an active, healthy second-grader, had mysteriously developed signs of liver failure. First taken to Sanford Medical Center in Fargo, then to the University of Minnesota Masonic Children's Hospital in Minneapolis, Arlyn's condition deteriorated rapidly.
He was placed at the top of the list for a liver transplant on Aug. 6. A few hours later, he met baby sister Adelie. On Aug. 11, the day his mom was originally scheduled for her C-section in Fargo, Arlyn received a new liver.
"After his transplant, we laid Adelie next to him and she snuggled up, touching his head with her head," Erica said.
His recovery has been rocky-a step forward, a few steps back with infections, blood clots and other complications. Doctors still don't know what caused the liver failure in the first place.
Mom and son have been away for more than two months, while oldest child Aleksia, 10, has been staying with grandparents and continuing her home schooling at a Ronald McDonald House near the Minneapolis hospital.
Baby Adelie only knows the inside of a hospital room so farm, where her parents stay at night. She went four days after her birth without a name.
"Arlyn was getting so sick so fast, we couldn't focus on what you even name a baby," Erica said.
Still, the family is together, holding movie nights in Arlyn's hospital room as often as possible, striving for normalcy in a wildly abnormal situation.
"I don't even know how to express it," Neal said. "You do what you have to do."
'Your skin looks yellow'
On Sunday, July 24, Arlyn and his dad returned to Moorhead from a fishing trip. As Arlyn filled his mom in on the weekend fun, she noticed his color was off.
"Your skin looks really yellow, your eyes are really yellow," Erica recalls telling him.
She called a local nurse line and was told as long as there's no fever, she could follow up with her son's pediatrician the next day. But later that night, Arlyn developed a fever, so Erica brought him to the emergency room.
They haven't been home since.
Blood tests revealed liver problems, and Arlyn was admitted to the hospital. Further tests pointed to liver failure, and the family was advised he go to Minneapolis in an air ambulance.
"We got here, and things went downhill really fast," Erica said.
The liver damage boiled over to his kidneys, which also stopped working, prompting a need for dialysis for a while. And different medications he was prescribed brought difficult side effects. Steroids gave Arlyn "roid rage," and the normally happy, joking, fun child would cry, scream and flail about, trying to rip intravenous tubes from his body.
"That's when we started seeing our boy slipping away a little bit," said Erica, her voice breaking.
Doctors feared Arlyn would injure himself or cause bleeding on his brain if he struck his head, so he was sedated for his own safety.
"We just prayed, 'God just bring our son back,'" Erica said.
When the call came that a donor liver was available, Arlyn's parents felt mixed emotions.
"We had prayed so hard for God to provide a liver for our son, but we felt guilt over knowing that someone had to lose their life," she said.
The surgery done on Arlyn at Masonic Children's is known as an auxiliary transplant. He actually has two livers, for now.
Doctors put in the donor liver but kept Arlyn's own liver in place with the hope that his native liver will heal.
"If the transplanted liver can keep the body healthy and functioning, it gives the old liver a chance to regenerate," Erica said.
If his own liver recovers, he won't have to take lifelong anti-rejection drugs, and the transplanted liver will break down on its own. If not, the steroids are stopped, and the native liver will break down in similar fashion.
It could be six months before they know which way it will go.
In the meantime, doctors are also concerned about his nutrition. His body is pumping out a lot of protein in the large amounts of fluid he's producing, and he's lost any muscle tone he had.
"Watching our little boy waste away is difficult," Erica said.
But through it all, Arlyn's been a trooper-- even a "stoic little man," according to his dad.
"They'll ask for his pain rating, how he's feeling, he'll say 'Good,' when a moment ago, he was either puking or wincing in pain," Neal said.
His strength helps his parents stay strong.
"Inside, he's kind of a mess but on the outside, my son inspires me," Erica said. "He's a better person than I will ever be."
Star stickers for prayers
Arlyn is still managing to find joy inside the walls of a hospital. He tries to make the nurses laugh with his jokes and with the help of a little Nerf gun he keeps hidden under the bed covers.
He loves to get letters and packages and is thrilled with the U.S. and world maps in his room that are peppered with star stickers from people who've said they're praying for him to get better.
"We have 19 different countries and 46 different states represented. Across this world, my son is being covered in prayer," Erica said.
But Arlyn is also quick to deflect the support to others. When his mom and dad were feeling sad about a new complication and went to submit a prayer request at the hospital children's chapel, Arlyn suggested they instead pray for a cousin who had hurt her head in a fall.
"He's always been a little like this-a happy, encouraging, strong little boy. Both he and his sister are compassionate people," Neal said.
Word of Arlyn's plight has spread via family and friends on social media and through Metropolitan Baptist Church in Fargo, which the Andersons attend.
A fund drive is underway on a crowdfunding website to help cover medical costs, household bills and lost income from Neal being away from his job as a field service technician.
"There's no way we could have done it on our own," Erica said. "It's crazy, with everything that's gone wrong, God has watched over our family."