Lubbock family shares story of hope, faith, and gratitude after infant’s liver transplant

LUBBOCK, Texas (KCBD) - Lee Johnson is familiar with obstacles.

At just four-years-old he has spent more time navigating hospital hallways than neighborhood sidewalks.

Parents Jaedee and Kinzie Johnson said the challenges started with an emergency C-section one month before Lee’s due date.

“He had a lot of trouble breathing; he had to be intubated for a while. He was in the NICU for a month,” Jaedee said.

Lee finally came home, but not for long.

“We went to one of his checkups after the NICU and the pediatrician said he looked very yellow, jaundice,” Jaedee said.

Testing confirmed Lee had biliary atresia, a rare disease where bile flow from the liver to the gallbladder is blocked, which can lead to liver failure.

“Just a flood of emotions. Not knowing if your child is going to survive something is very difficult,” Jaedee said.

“A whole lot of denial throughout the process. It can’t be this disease because it’s too rare, it can’t be this disease because the fatality rate is too high,” Kinzie said.

The Johnsons traveled to Texas Children’s in Houston so Lee could undergo immediate surgery in hopes his liver could be saved.

After the Kasai procedure, the Johnsons returned to Lubbock where with time, they learned the procedure had failed.

“At that point it was pretty emergent, and we had to get him airlifted again to Houston,” Kinzie said.

It was 2020 and due to COVID-19 restrictions, the Johnsons had to put their only child, just months old at the time, on a plane without them.

“I think that was the worst day of my life,” Jaedee said.

The Johnsons drove to Houston where they encountered additional COVID restrictions.

The hospital only allowed one visitor per 24-hour period.

For weeks, Jaedee and Kinzie took turns visiting their son who was in and out of the ICU.

“Nothing they are doing is to cure anything at that point. He is getting worse and worse every day and the only thing that can save him is a liver transplant,” Kinzie said.

The Johnsons wrestled with knowing the sicker Lee became, the faster he moved up the transplant wait list, but that was just one of the many challenges they faced.

“Part of the disease is that without the liver functioning properly, the body can’t absorb the nutrients and fats of things,” Kinzie said. “He was essentially being sustained through IV nutrition, so he wasn’t growing. Since he was so small, it made it difficult to do the transplant and to find a compatible liver,” Kinzie said.

Lee’s medical team searched for a match, and came close twice, only to return to Houston with bad news.

Then, the Johnsons received an answer to prayer; doctors found a match.

The news left Jaedee and Kinzie with an enormous amount of hope and grief.

“We did not want a child to lose their life so our child could live. That is something we really struggled with,” Kinzie said. “Our hope was that if, in an unfortunate event a life was lost, something good come come out of it.”

As Lee entered the operating room, his parents did the one thing they could to help their son.

“I think that was the most I have ever prayed in my life. I don’t think we could have made it through this without our faith,” Jaedee said.

The surgery went well and Lee entered recovery.

“In ICU when he was in recovery, it was like a scene out of a sci-fi movie. He had so many monitors and machines hooked up to him. You would have to duck your head to see him,” Kinzie said.

About two months later, the doctors cleared the Johnsons to return home to Lubbock.

“When we left the hospital, he was on high doses of immunosuppressants. I think we had 14 medicines that he had to take twice a day,” Kinzie said.

One of those medications is an immunosuppressant.

“They have to have the immunosuppressant really high so the immune system doesn’t reject the new organ but that means they are high susceptible to any virus, bacterial, anything like that. Normal times that is difficult but then you have Covid too which was a new challenge,” Kinzie said.

Lee is now down to two medications, but will likely need to take an immunosuppressant for the rest of his life.

He has regular check-ups in Lubbock and still travels to Houston to meet with his medical team there.

“It is still extremely nerve wrecking there is a lot of anxiety and unknowns. Things can turn sideways so quickly for so many different reasons. We are so thankful and we try to hold on to the good stints,” Kinzie said.

Lee celebrated his fourth birthday on February 25th. One month later, on his due date, he welcomed his little sister, Allison.

While birthdays are certainly special occasions in the Johnson home, so is October 17, the day Lee received the gift of life, again.

“We are forever grateful to our donor family. There is no way we could ever repay them,” Jaedee said.

April is National Donate Life month.

According to LifeGift, there are 2,000 children on the organ transplant waitlist, and 42 are younger than 12 months old.

Donate Life Texas reports as many as eight lives can be saved through an organ donor, and an additional 75 lives or more can be improved through tissue donation.

The Johnsons hope by sharing their story, others will consider becoming a donor.

“We owe our son’s life to it,” Kinzie said.

Click here to learn more about registering to become a donor.