By Mike Brue
EAST GRAND FORKS, Minn.
Teagan Leehan’s chubby legs pushed her quickly into Jenny Jump Up high gear.
“Ahhhggggkk!” the excited 10-month-old hollered. A squeal of delight and several more bounces followed. Bounce, bounce, bounce, bounce. More baby-speak exclamations. More bounces.
“That’s her,” Drew Leehan remarked. He and Lyndsey Leehan, both sitting in the living room, admired their baby daughter, strapped vertically into an infant exerciser secured to the doorway between their kitchen and dining room.
“She never was a big belly time girl,” Drew continued. “She hates always being on her belly. She wants to walk. She wants to stand. She wants to start moving. She’s very energetic.”
Just months earlier, when she sported the distended stomach of a baby with a failing liver, Teagan was a slightly less energetic non-crawler. “She just kind of teeter-tottered on her belly,” Drew recalled. Her typically energetic nature and generally normal physical development belied the fact that she indeed was ill — and getting sicker.
Now, with not one but two liver transplants as part of her back story, Teagan appears to be putting the teetering life behind her.
It’s not without help. She requires twice-a-week blood draws and a daily regimen of 13 varied drugs, administered up to four times each day on a schedule as precise as her parents can make it.
She likely will require drugs to keep her newly transplanted liver healthy and functioning for the rest of her life. Her liver produces the substances needed for her energy, growth and healing. It metabolizes and detoxifies the food and liquids she’ll ingest, and it will filter impurities from her blood.
Yet, it’s the renewed potential for a good, long life that Teagan, the bouncing baby Leehan, reinforces each new healthy day.
The Leehans see it and treasure it.
She is her parents’ Halloween treat, born Teagan Rae Leehan –all 20 ½ inches and 9-pounds, 13 ounces of her – at a hospital in Salina, Kansas. Her parents, married in 2007, had moved to Salina from Grand Forks, N.D., at the start of 2011 to accommodate a new job for Drew.
Oct. 31 was Teagan’s due date, too.
For about seven of her first 10 months, though, Teagan’s apparent visible displays of good health proved to be more trick than treat. In fact, her true health provided the Leehans with enough scares to last several parental lifetimes.
It began with that Friday in December, the 19th. Lyndsey had taken Teagan for a medical checkup about a possible ear infection and her yellow-looking skin. Drew vividly recalled his wife’s words during a phone call: “Her liver is not working. Something’s wrong. We have to go to Kansas City. . . .”
It turned out that Teagan had biliary atresia, a life-threatening condition. Bile — fluids of waste and toxins from the liver — was piling up and damaging that organ, thanks to improperly formed bile ducts. Normally, bile drains to — and is stored inside – the gall bladder, or it flows to the small intestine, where it helps the body digest some types of vitamins and fats.
Teagan’s skin had turned her pinkish skin and the whites of her eyes an unsettling, jaundice yellow. Otherwise, her parents recalled, she was eating well, gaining weight, smiling and seemingly happy.
At a Kansas City, Mo., children’s hospital on Christmas week, surgeons performed a so-called Kasai procedure on Teagan to create a new duct allowing bile to move from the liver. The procedure provided a Christmas season gift of time, not a cure. Chances were good, but not certain, that she’d someday need a liver transplant.
The Leehans emerged from 10 days with Teagan at the Kansas City hospital, determined to rearrange their lives to accommodate Teagan’s health challenge. They chose to return to Grand Forks and East Grand Forks, find work and take advantage of other family members’ readiness and willingness to help them with Teagan.
Lyndsey returned to her work as an emergency room nurse at Grand Forks’ Altru Hospital. Drew’s former employer, LM Wind Power in Grand Forks, hired him on a temporary contract as a production supervisor.
Months later, during a fateful five-day stretch in late June and early July at the University of Minnesota Amplatz Children’s Hospital in Minneapolis, Teagan’s apparent need for a transplant became certain. Then urgent. Then critical.
After an initial transplant evaluation, the Leehan’s baby daughter shifted from a lower priority for a donated liver to the top of the list nationally.
Ultrasound images revealed a tumor, likely cancerous, on the baby’s liver. Given her need for a transplant, chemotherapy was impractical, the Leehans were told.
A donor liver was located and secured. The transplant took place.
The surgeon came to the waiting room, where the Leehans and other family members awaited word.
“It’s really kind of like those movies or on TV. . . . It’s very surreal,” Drew recalled. “He comes out and says, ‘I want to talk with you alone. Let’s go sit down.’
“And then he tells you, ‘It’s not working.’”
“That’s the first thing he said,” Lyndsey confirmed.
“And then,” Drew continued, “everything bad you can think of happens all at once.”
The Leehans learned that the failure of the first transplanted liver to function sufficiently created a critical window –an estimated 36 to 48 hours – to either find a suitable donor organ or lose Teagan altogether.
The Leehans were given permission to see Teagan in intensive care. “My little girl, there, with tubes all in her,” Drew recalled. It was a sharp contrast from only hours earlier, he said, when Teagan was “happy as a clam, getting all sorts of attention from everybody and loving it.”
Little Teagan survived the night, and the next day and night, as the transplant team passed on two less favorable donor prospects before the search focused on a 15-month-old baby who had died in Arizona.
“For the first liver transplant, you never think it’s not going to work,” Lyndsey recalled. “You think, ‘She’s going to get this liver, and everything is going to be good.’ But with the second one, all I could think about is, ‘Is this one going to work?’ I wasn’t trying to be pessimistic, but I’d now seen the other side of it.”
The following day, July 1, arrived. By day’s end, Teagan Leehan was alive with a healthy, functioning, donated liver.
Looking back, the Leehans say, their scariest moments were still to come.
It happened in mid-July, several weeks after Teagan’s successful transplant, and a couple of days after the Leehans first were allowed to leave the University of Minnesota hospital with Teagan. Because of a continued need for Teagan to receive more monitoring, testing and checkups, the young family wasn’t yet allowed to be more than a short drive away. So, they stayed with one of Lyndsey’s cousins who lives in the Twin Cities metropolitan area.
A home health provider had been over a short time earlier to draw blood from Teagan via a dialysis line that remained attached to her body. The line from the blood draw was flushed.
Less than an hour later, Teagan “all of a sudden just got really, really, really sick,” Drew recalled.
The little girl alternated between vomiting and dry heaving. Her bowel was moving. Her fever rose from 97.5 Fahrenheit to 102 and climbing. Her skin turned gray and mottling. Little Teagan’s body had a severe reaction to an infection, and sepsis had started before their very eyes.
“I’m a nurse, and I’ve seen it before, but I’d never seen it happen that fast,” Lyndsey said. “I think that maybe at the time that I was more scared because I knew what was going on.”
The Teehans rushed to the University of Minnesota Amplatz Children’s Hospital, where Teagan’s transplant had taken place. She was readmitted.
With antibiotics and round-the-clock supervision, Teagan’s infection was treated and ultimately eliminated.
But it’s not been forgotten.
”I look back,” Drew recalled, “and the scariest thing to me was that infection. That was just so quick. And she was right in my arms, and I was looking at her and she was dying.”
A few months later, Drew and Lyndsey Leehan prefer looking forward while relishing Teagan’s healthy present.
And loving a child who is energetic, healthy and very possibly bouncing.
The writer, Mike Brue, is communications director for NDAD. You can reach him at (701) 795-6605 or firstname.lastname@example.org.
About NDAD’s Community Fundraisers program
NDAD-sponsored community fundraisers are conducted by friends and families of a person with a disability or a serious health challenge.
NDAD, a charitable nonprofit organization, acts as custodian of the funds raised, which can be used to help the individual with medical and other urgent needs and expenses, including helping with doctor, clinic or hospital bills and paying pre-existing bills. NDAD allows the client to use the bank of his or her choice to hold all funds that are raised.
The community fundraiser service is offered free of charge by NDAD. All funds raised are spent on the client’s needs – in Teagan Leehan’s case, medical bills — particularly for the medications needed to sustain her healthy liver — and other essential day-to-day expenses. It’s a service NDAD has provided across North Dakota for the majority of its 37 years. References are available.
The service offers benefits in several ways. NDAD is a 501(c)(3) charitable organization, meaning any funds donated to NDAD qualify for a charitable donation and are deductible for donors who itemize. Funds donated to bank accounts that are not under 501(c)(3) status are not deductible funds.
Donations directly to a needy individual also may cause that person to lose eligibility for various public assistance programs that are based on income. With NDAD as fund custodian, the funds should protect eligibility for public programs. NDAD tracks all funds raised and expenses paid. The client, family member or representative can bring in the donation, and NDAD will provide the necessary accounting functions.
Approved bills must be submitted to NDAD, where they will be paid with donated funds — a service that can be of great relief to individuals or families dealing with overwhelming situations. If clients are at medical facilities out of town for long periods of time, it also can be a great convenience.
NDAD’s long reputable service in North Dakota also is a factor sometimes when potential donors consider a fundraiser sponsored by the organization.
Learn more about NDAD’s Community Fundraisers program by calling (701) 775-5577 or toll free 1 (800) 532-NDAD. Learn about other upcoming fundraisers at http://www.ndad.org/fundraisers.asp .