Outside a Starbucks during one of the nicest days in this Texas winter, Stephanie Luhm of Little Elm was sitting across from me with a warm tea. It was 80 degrees outside, and she had ordered an iced tea, but the barista had gotten her order wrong. Twice. Being the woman she is, Stephanie took her hot drink outside and laughed the whole ordeal off. That’s just the way she is: Go with the flow. Whatever happens happens. Just keep truckin’.
It came as no surprise that when Stephanie began to talk about the kidney she donated to her son, Wiley, now 4½, she was open and positive about everything that she had been through. “Everyone says they want a healthy baby,” Stephanie says. “We just wanted a happy baby, and he was. He was such a happy baby and so much fun and brought joy to us.”
Most of us are born with two kidneys, but we don’t think much about them, even though they are vital to our survival. Without at least one kidney, our blood would be contaminated by waste and water. So, when doctors found out Wiley had a kidney disease, the Luhm family’s lives were changed—for the best, despite all the obstacles to come.
Stephanie and her husband, Mike, had been married for 10 years prior to Wiley. Although they had struggled to conceive a child, when she did get pregnant with Wiley, there was nothing abnormal—although at 40, she was a little older than most first-time mothers. At 38 weeks pregnant, Stephanie’s blood pressure went up, and labor had to be induced. It was a Wednesday. Nothing was progressing. On Thursday, the decision was made to perform a Caesarean section. It all happened so quickly: Wiley was born June 26, 2014, at Baylor Scott and White Medical Center in Frisco. But he was having a hard time breathing. Doctors found a small hole in his lungs, so they took him to the neonatal intensive care unit.
By Friday, the hole had been repaired. Something still wasn’t right. On Saturday, blood tests confirmed Wiley was in renal failure. Just two days after her C-section surgery, Stephanie was up and rushing behind her little boy on the way to Medical City Dallas Hospital. Emotions were high, and to add to the stress, Stephanie and Mike weren’t allowed to ride in the ambulance with their son. They had so many questions. What is happening? Why is this happening? Will Wiley be okay?
“That drive to Medical City was probably one of the hardest things I’ve ever had to do,” Stephanie recalls. “My husband, he’s a Dallas firefighter, and he went through paramedic school. I just remember him saying in the car, ‘You have to make pee to live.’ And for them to be telling us that Wiley isn’t urinating … and the unknown of not knowing if he was going to make it or not was probably the most terrifying thing that I’ve ever gone through.”
Strapped with a ‘fire hose’
Once the family had arrived at the hospital, Dr. Albert H. Quan was there to assist them. The prognosis came back that Wiley had a posterior urethral valve, which is a fancy way of saying that while he was in Stephanie’s womb, a small piece of tissue developed that prevented him from urinating. Since Wiley couldn’t urinate, his bladder backed up the waste into his kidneys. This ended up being the cause of his kidney failure. Now, a typical patient would have two options: hemodialysis and peritoneal dialysis
To be able to do hemodialysis, the patient would need to be large enough to receive an artificial kidney to assist in removing the waste, chemicals and fluid from the blood. To be able to use the artificial kidney, doctors need to access blood vessels. Since Wiley was only 3 days old, his arteries were too small for that procedure. Instead, Wiley went into surgery on Sunday for peritoneal dialysis—which places a catheter in the stomach and uses a cleansing fluid to remove the waste from the blood.
Wiley’s troubles weren’t over, though. By the end of his 36 days spent in the NICU, Wiley had been through four surgeries—one to repair the posterior urethral valve, one for the catheter and two for hernias that were caused by dialysis. After he went home, for the first couple of months there were still plenty of lab pricks, doctor visits and of course, the new night and morning routine Stephanie and Mike worked through.
“We had this big machine and these solution bags, so you’d go in, and there’s this whole routine you have to go through,” Stephanie says. “You have to get clean. Wear a mask. You have to go in and connect his machine. You let it kind of process and everything, then you take him in, and you connect him. He’s got this little cord to connect him. My husband always calls his little catheter a ‘fire hose.’” Every night at 7pm, Wiley would get cozy with his fire-hose contraption until 7am the next day.
“When we first got home, he was doing it for 12 hours,” Stephanie says, “and I had to start going back to work. So that was really stressful. I remember several times on the way home being stuck in traffic bawling because he has to be on the machine at 7 to be done by 7 for me to then get to work the next morning.” The time Wiley spent on the machine eventually went down from 10 to eight hours, and he ended up spending only eight hours with the machine most nights.
“He was our million-dollar baby,” Stephanie jokes, but she’s being serious. Three years and three months, and roughly, $33,000 per month for those three years: That’s how long the dialysis went on and and how much it cost. By January 16, 2017, Wiley was 2 years old and 15 kilograms (or 33 pounds), which meant he finally weighed enough to be a candidate for a kidney transplant. This was a no-brainer to Stephanie. After multiple doctor appointments and blood work, Wiley’s case was presented to a transplant committee. If he was approved, he could be put on the list.
A shift in the flow
“I knew immediately, I am going to do my best to be his donor and do whatever I needed to do,” Stephanie says. In May 2017, Wiley was approved to be put on the donation list. “At that point, he could receive either a living or deceased donor, so he was on the wait list,” Stephanie says. “May is when I first started testing [to be the donor]. I had to do all kinds of blood work, different kinds of X-rays and EKGs, X-rays of kidneys and all that. I had to be healthy. At first they came back and told me, ‘We want you to lose some more weight.’ So I did. Whatever needs to be done.”
In August, Stephanie was approved to be Wiley’s kidney donor. The surgery was scheduled for Sept. 26, 2017.
Stephanie being a match for Wiley meant he was going to get a kidney way sooner than if he had remained on the wait list; doctors had told Stephanie that the wait list could take up to five years. Imagine another five years of keeping Wiley in his bed with his machine. That meant no sleepovers, no nighttime movies, no date nights for Mom and Dad. The dialysis is a critical process and any mistake can cause Wiley to get extremely sick with peritonitis. Stephanie didn’t want to risk that with a babysitter. The transplant would mean Wiley would be able to do everything any healthy kid could do.
“No more hookups,” Stephanie and Mike would tell Wiley. “No more machine. No more fire hose.” It wasn’t easy to tell a 3-year-old that his mother was going to give him her kidney, but it didn’t matter. All that mattered was that Wiley was going to get better. Through the support of their neighbors, the couple was able to mark the victory with a “Urination Celebration.”
The transplant took place as scheduled. The surgery went great, and Wiley’s new kidney began to work right away. For Wiley, it wasn’t a simple surgery. Being as small as he was meant that doctors needed to open him from his chest to his groin area. For Stephanie, the procedure was simple: four small incisions through laparoscopic surgery, and then doctors used her C-section scar for the kidney removal.
Just two days after surgery, Stephanie was off pain meds and ready to be released from the hospital. She was now grinning and giggling talking about how easy the transplant was for her and how big of a difference it had made for her family’s life. “I felt fine,” Stephanie says. “I felt no different. No changes in me. Him on the other hand, 100 percent a new kid. It was amazing to see the difference. We never viewed him as sick. We always said he had extra steps, but we never said he was sick. But to look back to see how he is now vs. then, he was sick. We just didn’t see it. He’s such a strong kid.”
A new start
Before the transplant, Wiley appeared to be timid. The neighbors’ kids were around the same age as Wiley, and they would run around all day—“rough and tumble,” as Stephanie describes them. All of them would be roughhousing except for Wiley. “He just watched and [we] figured he was shy,” Stephanie says. “Looking back, maybe he was guarded. Maybe he didn’t feel good enough to do that stuff because now he is rough and tumble. It completely changed who he is.”
Just a week after Wiley was released from the hospital, the family went for a walk. Wiley was ready to go. “So we go outside walking one afternoon, and he takes off running. He goes, ‘Mama! Mama! Chase me!’ And he’s just sprinting, and I start to take off for a little bit, and I’m like, ‘Oh! No, no, no, no, Mommy can’t run quite yet.’ And I’m thinking, ‘[He’s] been cut all the way, and he’s running.’ It didn’t faze him one bit. It was just amazing.”
Wiley was even able to pick up a new hobby—swimming. His house always had a swimming pool, but with his catheter, swimming took quite a bit of prep, cleaning during and after to prevent an infection—oh, and he could only use private pools (no splash pads either, sadly). Now, Wiley can put on his swimsuit and go straight into any pool without ever having to leave the water mid-swim to clean his catheter again.
After this experience, Stephanie has become an advocate for organ donations. For those who have yet to mark themselves as donors on their driver’s license, Stephanie asks a sobering question: “Why would [you] bury someone that could keep someone else alive?” And she asks others to consider being living donors, too
“If you’re healthy enough, and you can do this for somebody else, it’s the greatest thing to do,” she says. “If I wasn’t able to do it for Wiley and I could give my other kidney to somebody else, I would. I feel no different. It was easy for me.”