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Published October 01, 2012, 03:17 PM

East Grand Forks Baby on the Mend After Two Transplants

Teagan Leehan is a bubbly 11-month-old with wispy, reddish hair. Nothing about her cherubic smile, chubby cheeks and inquisitive eyes gives a hint of the ordeal she’s been through — two liver transplants and an infection that threatened her young life.

By: Pamela Knudson, Grand Forks Herald

Teagan Leehan is a bubbly 11-month-old with wispy, reddish hair.

Nothing about her cherubic smile, chubby cheeks and inquisitive eyes gives a hint of the ordeal she’s been through — two liver transplants and an infection that threatened her young life.

These days, the daughter of Drew and Lyndsey Leehan of East Grand Forks “is gaining weight and developing like normal,” her mom said.

“She’s kind of a chunk,” said Drew, glancing at his first child with a broad smile. “We’re happy with her being fat. Otherwise, she’d have to be on a feeding tube.”

Teagan is on a regimen of 13 medications, including three anti-rejection drugs to promote the body’s acceptance of the liver she received in a transplant operation in July at the University of Minnesota Amplatz Children’s Hospital.

“She’ll always be on anti-rejection drugs for most of her life,” he said. Average cost for these medications is $3000 a month.

“Medications are covered by insurance but not covered well,” Lyndsey said. “You still have to pay pretty high deductibles.”

A fundraising event, held Sept. 16 in Grand Forks to ease the family’s financial burden, “was wonderful,” said Lyndsey’s aunt, LaRae Foerster of Grand Forks, who organized the effort. “We had a pretty lofty goal, and we surpassed it.”

“Team Teagan” raised enough money to meet the Leehans’ medication expenses for nearly a year, she said.

Another fundraiser is set for 5 to 9 p.m. Oct. 10 at Pizza Ranch in Grand Forks. Team Teagan will do all the bussing for the restaurant that day, and a tip jar will be designated for donations, Foerster said. Continued fundraising is planned.

Dark times

The Leehans’ darkest times began when Teagan, at about seven months, was diagnosed with biliary atresia, a blockage in the ducts that carry bile from the liver to the gallbladder.

The condition occurs once in 10,000 births, Lyndsey said, and is congenital but not genetic.

The young family was living in Salina, Kan., where Drew had accepted a job in January 2011.

Teagan had a yellowish coloring, but “we were told it would go away,” Lyndsey said. “We didn’t think anything was wrong.”

She was pulling at her ear when they brought her to a clinic for a suspected ear infection. Their doctor sent the lab results to a pediatric specialist in Kansas City.

“Waiting for the results to come back — that hour to an hour-and-a-half without knowing anything — that was the scariest part,” said Lyndsey who, as a nurse, “maybe knew a little too much” for her own good.

Within a week, the family had an appointment for further testing at a Kansas City hospital where Teagan had an ultrasound, followed by a liver biopsy, and was admitted for surgery — all within three days.

The seven-hour operation, to remove her bile ducts, gallbladder and link her liver to her small intestine, was a stop-gap measure intended to buy time, Lyndsey said.

“It was scary,” she said, “and hard, because we were in Kansas City, with no family around. We didn’t know anybody.”

Lyndsey’s parents, Ken and Rachel Van Epps of East Grand Forks, came to Kansas to help out.

That Christmas was spent in the hospital as Teagan recuperated. Shortly after, Drew and Lyndsey “decided to move back here, just to be closer to family,” she said.

In East Grand Forks, they traveled to the University of Minnesota in Minneapolis for Teagan’s post-surgery check-ups which began in February.

Liver transplant

By the end of May, Teagan’s lab results had worsened and, in June, she was referred to the U of M transplant team. The decision was swift: she needed a transplant.

“She was growing weight-wise but not length-wise,” Lyndsey said. “They said her color was pretty bad. We didn’t think so because we were so used to it.”

An ultrasound revealed a spot on the liver that the team believed was cancer.

On June 28, Teagan’s name was placed high on a regional list for a liver transplant. The next day, in a five-hour surgery, she received a new liver.

But the surgery was unsuccessful.

“The surgeon said that had happened only one other time” in his experience, Lyndsey said.

Teagan was then listed in the highest category, “Emergent 1A,” which qualified her to receive a liver from anywhere in the nation.

On July 1, after the second transplant, a different surgeon emerged from the operating room, Lyndsey said. This time, the surgeon, who had also done the first surgery, was beaming.

“He was cheerful,” Drew said. “He was like, ‘We’re good to go!’”

The joy was disrupted when, three days after being discharged, Teagan was readmitted to for a serious infection that caused her temperature to spike from 97.3 to 102 degrees within 45 minutes.

Luckily the family stayed in the Twin Cities with relatives, and could quickly return to the U of M where physicians discovered a blood clot, which further complicated her condition.

Medical professionals took steps to determine that the liver was not part of the problem when the blood clot hit, Drew said.

It took another 10 days in the hospital before the worst was behind them.

Under transplant program rules, Drew and Lyndsey have no information about the donor but may offer a letter to the donor’s family one year after transplantation, Drew said. The donor family then has the option of accepting the letter and responding.

Essential support

Through it all, the most difficult aspect for Drew was the medical language, he said. “They throw out all these three-letter acronyms.”

“When you don’t understand the medical terminology, you kind of get lost.”

Lyndsey found it most difficult when she realized, “I can’t do anything. I have to sit and wait. I can’t help her and I can’t make her better.

“I can be there and comfort her… but I can’t fix her like I think I should be able to.”

They are grateful for the support of family and friends, as well as their employers, Altru Health System and LM Wind Power, which were “very understanding,” Lyndsey said.

“There are not enough ways to say thanks,” Drew said. “We appreciate all the support from everybody — even people we don’t know. It’s been wonderful.”

That support helped her through the trying times, Lyndsey said, “and lots of praying.”

The ordeal made her faith stronger, she said, “definitely.”

How to help:

• Attend the ‘Team Teagan’ fundraiser, 5 to 9 p.m. Oct. 10 at Pizza Ranch, Grand Forks.

• Send or drop off checks, made out to “NDAD/Teagan Leehan,” to NDAD, 2660 S. Columbia Road, Grand Forks, ND 58201, or give online at www.ndad.org/fundraisers.asp.

For more information, go to www.facebook.com/teaganleehan1 or ndad.areavoices.com.