When Jenny and Tyler Hougom and their three-year-old daughter Valerie welcomed baby Lucas to their world in August 2019, he appeared strong and healthy, but within days Lucas was diagnosed with congenital cytomegalovirus (CMV) a common virus that rarely causes problems in most healthy people, but can cause hearing loss and neurologic issues in newborns.
For Lucas, it resulted in 10 days in their local NICU where he received platelet transfusions and blue light therapy for his jaundice. But his blood count stabilized, and Jenny and Tyler finally took their baby home.
What followed was “what felt like a lifetime of blood draws and labs,” said Jenny. After six weeks, Lucas’ platelet counts remained stable, but his bilirubin level was not decreasing. “The team told us they had never seen CMV attack the liver,” said Jenny, “but they referred us to Dr. Sigurdsson at American Family Children’s Hospital (AFCH), so off we went to Madison.”
Dr. Sigurdsson ruled out biliary atresia, a disease of the bile ducts, but Lucas continued to decline.
“That’s when we met Dr. Furuya, and had our biggest, life-changing appointment,” said Jenny.
Dr. Furuya, pediatric transplant hepatologist and medical director of the pediatric liver transplant program, knew right away Lucas would most likely need a liver transplant.
“It’s very rare for congenital CMV to cause cirrhosis and liver failure in infancy,” says Dr. Furuya. “We provided supportive care, optimizing his condition, so he would be ready for liver transplant.”
Race against the clock
Most of November was a whirlwind. Lucas was in the hospital for a week, then able to go home for a few days, and the cycle would repeat. The team worked to help Lucas gain weight and improve his eating. In early December Lucas spiked a fever and was readmitted to Gundersen Hospital. He suffered a severe reaction to his medications and had a possible seizure. Lucas was transferred to AFCH, for further management. By mid-December it was clear Lucas desperately needed a transplant. But at only 11 pounds, a liver transplant at this age, for this disease, with active CMV, had not been reported.
“We were very concerned about listing Lucas for transplant while he had CMV,” says Tony D’Alessandro, MD, transplant surgeon and surgical director of pediatric liver transplant. “No other child in Wisconsin had ever been transplanted with active CMV.”
The team consulted with pediatric infectious disease specialist James Conway, MD for help in controlling his active CMV disease as much as possible, prior to liver transplant.
“We were in uncharted territory, and everyone agreed that Lucas was a very unique case,” said Conway.
Lucas was listed for transplant, but donor livers from babies are very rare so the search began for a living liver donor. Lucas needed a very small donor who matched his blood type, which ruled-out many family members. The Hougoms posted a plea for a donor on Facebook.
Within two days Lucas’ transplant nurse coordinator, Beth Gerndt-Spaith, had more than 100 potential donors step up. “Many of them were strangers,” says Jenny. “We couldn’t believe it! This surgery is a big deal, and we were so comforted by this response.”
Ultimately, none were good matches for Lucas. The family made plans for Christmas and prayed for a miracle. After the holidays, they posted another Facebook message, and their miracle began.
1000 miles away in North Carolina, Christina Wettstein received a message from her best friend from high school: Did you see this about Jenny’s baby?
Christina and Jenny, who grew up in Onalaska, were friends in high school but hadn’t connected since early college. “I thought to myself, I’m the right size, I might be able to do this,” says Christina.
But first, she needed to learn her blood type. Her husband Alex is a Marine who was deployed in Norway, so Christina went to the military base hospital. “I told the corpsman why I needed to know my blood type, and that I hoped it was O so I could maybe donate part of my liver to save my friend’s baby,” says Christina. “After the test, he was so excited, even teared up, yelling ‘You have O blood!’”
Christina called Alex to tell him she was the right size and blood type. “You gotta do this,” he replied.
“I filled out the form to be a donor,” said Christina, “and messaged Jenny: I’m going to come and get screened. They feel good about my chances of being the donor.”
Stepping out of Lucas’ hospital room to read the message, Jenny was overwhelmed.
“She’s in North Carolina, her husband is in Norway and she has a four-year-old and a two-year-old and she’s coming to Wisconsin,” says Jenny. “The fact that someone would do something like that was more than I could imagine. I just reminded her not to feel obligated.”
Within 48 hours, on December 26, Christina had booked a flight, and arranged for her parents to come from Florida to North Carolina to care for her kids. “My parents left a holiday party to drive 13 hours to my home,” says Christina. “I couldn’t have done any of this without their support.”
Christina’s support team expanded when her friend flew in from Minneapolis to be with her through the testing. While Christina went through a very thorough evaluation process her parents drove her kids to Wisconsin.
“The team did a really great job educating me about the entire process,” says Christina. “They told me about how serious of an operation it is and made me think long and hard about my decision.”
Christina’s main concern was for her children.
“I kept thinking, what if I can’t hold them?”
But Christina feels that everything happens as it should.
“I was at peace,” she said. “I knew that anything that I needed, someone would be there for us.”
After her evaluation, Christina learned that her liver was likely too large, and the team was reviewing another donor. She took her kids to Culver’s and tried to get over her disappointment.
“We’re sitting there having a normal family discussion and I get a call from UW Health saying they were going to try to do the transplant,” says Christina. “I was being a mom, cleaning up the milk my daughter spilled, when I learned that I as going to be Lucas’ liver donor. There’s something so right about that scene!”
After her final clinic appointment, for the first time in ten years Jenny, Christina and Tyler met to discuss the situation and share their hopes that all would go smoothly. Lucas’s was in dire need of a transplant, and surgery was scheduled for the next week, on Monday, January 13.
All systems go
The day before his surgery, the Hougoms enjoyed a nice Sunday together. They ordered a pizza, shared stories and snuggled with Lucas. Typically, one of them would go home for the evening but that night they both decided to stay at the hospital. A few hours before his surgery, Tyler noticed Lucas was stirring. Lucas started coughing and vomiting blood.
“I ran into the hallway screaming for help,” said Jenny. The PICU team arrived and they saw Lucas was bleeding from his bottom, too. Lucas was losing blood quickly. He was intubated and the team pumped blood and plasma for two hours working to stabilize him enough for surgery.
“I remember Dr. D’Alessandro saying, ‘he’s very sick’ and that they would ‘do their best but we should prepare ourselves and go tell Lucas we loved him,’” says Jenny. “We appreciated his honesty, and we knew there was no guarantee that Lucas would survive. We also knew he was a fighter.”
Lucas underwent vascular shunt surgery to help stabilize him from the massive bleeding. “Lucas’s liver was rock hard, and that caused the blood to go everywhere but through his liver,” says Jenny.
Because of the extensive bleeding, CT scans were performed to see if Lucas had bleeding to the brain. There was some blood by the base of his neck, but none inside the brain. “The team told us that we needed a scan without any brain bleeds before we could consider transplant,” said Jenny.
The Hougoms waited and watched their tiny, five-month-old son, battle on.
Waiting for action
Meanwhile, in her own room at University Hospital, Christina waited anxiously to learn if the transplant was happening. She had arrived 24 hours earlier, thinking the surgery would begin in the morning. Alex had received emergency leave and made the (what turned into a 55-hour) trek from Norway. He had little time remaining to spend with Christina before he had to return, so they were extra anxious about the delay.
“When my surgeon, Dr. Al-Adra, came in to my room,” says Christina, “he told me Lucas wasn’t doing well. I begged him to take my liver to save him.”
While the team worked to save Lucas, Christina had a good cry and then called her Grandma who prayed with her.
“I remember him saying, ‘This is a holding pattern,’ and he helped me so much. I just kept watching the clock…tick, tick, tick…thinking ‘I have to do this. He has to get my liver.’ I will never forget nurse Allison, who went through all my emotions with me and gave me so much love.”
After learning Lucas had pulled through shunt surgery, and that the team was hoping to do the transplant the next day, Christina was happy. And hungry. “I was so happy Lucas had made it,” says Christina, “and also, that I could eat!”
Back to the OR
Lucas was prepped for surgery. The team had to make sure none of his other organs were injured, and then decide if the transplant would proceed.
“It was good news, wait, good news, wait,” says Tyler. “We were exhausted, but hopeful.”
Christina waited in her room, hungry again, but hopeful. Suddenly, there were six people in her room, and she was off to surgery.
“I was so happy,” says Christina. “Next to having my kids, this was the best moment of my life! I had no fear or worry. There was just something there telling me do this for Lucas. There’s something special about that kid!”
In another area of the hospital, Jenny got a text from Alex. “‘We’re a go for donation!’
Later that evening, the family learned that both Lucas and Christina were doing well.
“They showed us a picture of Lucas’ old liver compared to his new liver,” says Tyler. “It looked like a big, black rock.”
The road to recovery
It was eleven long days before Jenny and Tyler could hold Lucas. His CMV levels were undetectable a few weeks after transplant but he remained in the PICU for six weeks. “It was a long road,” says Tyler, “but easier to manage when you can look forward to things getting better.”
“The care Lucas received was amazing,” says Jenny. “I will never, ever have more appreciation for a team than what I saw on January 13, and that level of care continued throughout his rehab. They cared for him like he was their son.”
Meanwhile, Christina was recovering at University Hospital, where, she says “The team was incredible.”
When she left the ICU, Alex returned to Norway. Comfortable knowing Christina and Lucas were doing well and in good hands.
“I appreciated that throughout the entire situation, I was a separate patient from Lucas,” says Christina. “They really cared about my situation and my health and went above and beyond to care for me, support me and be helpful. I had all the attention I needed to feel calm and comfortable.”
A week after surgery, Christina left the hospital to recover under the watchful eyes of her in-laws at their home in LaCrosse.
“They were so supportive during recovery,” says Christina. “I really had to rely on people and was so grateful to stay with them for six weeks.” It was wonderful how they and my sister cared for me and kept our kids happy.”
Lucas left the hospital just as the COVID-19 lock-down started, to go to the home he hadn’t seen in 100 days. Except for a few short admissions, Lucas continued to thrive and by July he had his first real bath since he was a newborn. By his first birthday, he was tube free and able to eat, drink and take his medications. Now he’s crawling, pulling himself on couch, and catching up quickly.
“As much as our family’s been through, and I wouldn’t wish this on anyone,” says Jenny, “but it’s bittersweet that every milestone he meets, we are just so proud of him. We don’t take anything for granted anymore. He made it through January 13, he made it through all those CT scans, he made it through his transplant, and,” says Jenny, “he just keeps surprising us with everything he does. He’s a very happy, independent little boy. Our gratitude is immeasurable.”
Christina returned to North Carolina with her daughters where her friends and family continued to offer help. It was 12 weeks before she could carry her kids. “That was hard, but by six months I felt like my usual full-strength mom,” says Christina. “The kids ask about my scar, but they love to Facetime with Lucas and Val for their birthdays.”
“It’s hard to wrap my head around what happened, what could have happened, that the surgeons were able to make this amazing miracle happen, and everything turned out the way it was supposed to,” says Christina. “I encourage other people to consider donating. We’re giving a million chances a day to improve the world, and I’m really grateful I had this opportunity.”