Four-year-old Ashton Guerra, son Johnny and Shayna (Barker) Guerra of El Campo, is like most four-year-old boys. He loves super heroes like Spider-Man. He also likes Mario Bros., Minecraft, Pokémon, Dragon BallZ, Paw Patrol and Mickey Mouse, playing with bubbles, Play Dough and cars, too. But Ashton isn’t your ordinary little boy. Diagnosed with a rare condition and in need of a new liver, he received the vital organ a week ago today. This gift, however, comes with great sacrifice as another family is grieving the loss of their loved one.
“Since his initial listing for transplant, we have prayed for his donor and his donor’s family,” Guerra said. “My son’s second chance for a healthy life has come at a great cost, beyond what can be imagined. While words cannot adequately express my gratitude for this gift, a family is grieving.”
Since the roughly five-hour surgery at Texas Children’s in Houston, Ashton has had a few complications, which is not uncommon as every donor recipient responds differently following implant surgery. He had moved to a regular room and was making good progress, had walked several laps around the room and got in and out of bed and into a chair okay, according to his mom.
“He is a bit wobbly, but determined to get back to his independence,” Guerra said.
On Monday evening, Ashton was transferred back to the intensive care unit due to complications.
“Ashton was rushed back to the PICU last night, he is currently intubated and being treated for a rare condition called Posterior Reversible Encephalopathy Syndrome (PRES),” Guerra said. “From my very limited understanding, it is caused by a couple of the post-transplant medications and high blood pressure.”
This condition, she said, is reversible and only temporary. Prior to this, he seemed to be coping, but with some troublesome water retention and blood pressure issues.
“Physically he is coping with the pain well,” Guerra said early Monday morning. “His kidneys are having some issues adjusting, he is retaining fluid and his blood pressure is quite high. Today (Monday) we discovered a possible allergic reaction to an antiviral that transplant patients take prophylactically.”
Born Jan. 28, 2016, Ashton seemed to be a healthy baby boy with a little jaundice, but after two weeks, he had not made any improvment. Through a series of tests and consulting with specialists, a diagnosis of biliary atresia came Valentine’s Day 2016.
Biliary atresia is a condition in which an infant’s bile ducts outside and inside the liver are scarred and blocked. Bile, unable to flow into the intestine, builds up in the liver causing damage. This leads to scarring, and possibly loss of liver tissue and function ... even cirrhosis.
“What Ashton has is so rare ... one in 20,000 live births in the world have this,” she said in an interview in 2018.
Because of the scarring, Ashton was in need of a liver transplant at the age of two. It won’t change the fact he has biliary atresia, but last week’s transplant will give him a healthy liver without the scaring.
Additional tests confirmed the diagnosis. At 25 days old, Ashton underwent a procedure to remove the blocked bile ducts and gallbladder and replace them with a segment of his small intestine sewn to the liver to function as a new extra hepatic bile duct system.
“It is the best known treatment to slow down the scarring effect, but it doesn’t cure it,” Guerra said.
The procedure was partially successful, however there were other complications from the disease; the inability to absorb fat soluble vitamins and the risk of infection, which requires hospitalization.
Even though Ashton was put on the liver transplant list at age two, it was prolonged until now.
The goal of the transplant is to eventually be taken off the antibiotic, however, he will have to take anti-rejection medications so his body will accept the new liver.
To be closer to family, the Guerras moved from Richmond to El Campo in August 2018. Since then, Ashton was admitted to the hospital for a non-liver issue in late 2018 and in February 2019 for cholangitis, inflammation of the bile duct system that is a complication of biliary atresia.
“The remainder of 2019 was calm and hospital free,” Guerra said. “Ashton has always had liver clinic visits every 4 - 6 weeks to monitor his health. During 2019, the main concerns were Ashton’s weight, vitamin A and K levels, sometimes requiring maintenance infusions, platelet counts and blood clotting times. These things gave us an indication of the damage Ashton’s liver was sustaining despite his overall good health. During 2019, we did our very best to enjoy the mainly hospital-free months.”
The Guerras hoped the coming year would be an uneventful one and hospital-free, but in late April, Ashton began having complications and was admitted to have an esophagogastroduodenoscopy (EGD) done.
An EDG is a test to examine the lining of the esophagus, stomach, and first part of the small intestine.
“During that procedure, inflamed and bleeding esophageal varices were found and banded as a temporary ‘band aid’ to the problem,” she said.
For Ashton, this was the turning point in his care.
“His liver doctor had many discussions with us regarding portal hypertension and esophageal varices in the past. He explained that once banding started it could not be stopped,” she said. “Since the development of portal hypertension, we knew Ashton was a ticking time bomb for a bleed, but the initial bleed and need for banding shortened that fuse.”
Following an appointment with his liver specialist in July, his parents and Ashton’s liver team began to consider treatment options for him.
“During his liver clinic visit at the end of July, his liver team, his father and I all decided now was a good time to get Ashton’s points on the transplant list up enough that he would start getting offers,” she said. “Making this move put us in a position to be picky and only accept an offer that was absolutely perfect for Ashton. The fear of waiting to get more points was that if Ashton’s conditioned worsened, we would be forced into taking a liver that was not perfect and increase the risk of transplant complications. By July 31, Ashton had completed the process. His liver doctor told us we shouldn’t expect anything too soon and to expect a potential ‘dry run’ where a liver is procured but for whatever reason doesn’t work out.”
Less than a month later, the Guerras received a call early Tuesday morning Aug. 25, that a viable liver looked to be a perfect match for their son. They packed up and drove to Texas Children’s Hospital in Houston for pre-op.
“At 8:09 p.m. Aug. 25, I got a call from Ashton’s transplant coordinator that the liver was being procured as we spoke and that Ashton was scheduled to be in the operating room at 3 a.m. Aug. 26,” she said.
Final preparations began around 1 a.m.
“By 1:50 a.m. we were being escorted to the pre-op holding area. I gave Ashton my final pre-op hugs at 2:50 a.m. and watched him be wheeled away by the surgical team,” she said.
Because of the coronavirus, only one caregiver is allowed to be with Ashton. Being alone in the waiting room, Guerra’s thoughts and prayers took over.
“More thoughts than my brain could even keep up with were taking place in that moment,” she said. “Mostly prayer, for him to tolerate the procedure well, for the surgical team to be sharp, steady and prepared for any scenario that may arise, prayers for the donor family grieving their loss, prayers for myself for peace of mind during the procedure. Every emotion possible flipped through me in an instant. As I sat in the waiting room completely alone at 3 a.m., I prayed and put Waymaker on repeat. I waited anxiously for updates, talked to family members as they woke up and messaged to check in on me. It was very surreal. We had talked, planned and prepared for that moment, but there’s nothing like actually living it. You’re helpless, completely out of control and your baby is in the care of strangers.”
Surgery began a little after 4 a.m. and surgeons finished up at 9 a.m.
Now, a week later, Ashton has had a few problems, and doctors and nursing staff are making adjustments.
“For the most part, Ashton is in good spirits, showing his determination to get back to his normal self,” she said. “But an operation of this magnitude has definitely taken its toll. He is tired of all of the poking, prodding and constant interference of the medical professionals just trying to do their part. He also misses home.”
There is no guarantee the liver will be viable for the rest of his life. He may require another transplant at a later time.
Ashton will be more susceptible to catching the common cold as well as at a higher risk for cancer. He will be followed by liver specialists and the transplant team his entire life.
As Ashton’s progress changes daily and sometimes from hour-to-hour, his parents are asking for prayers.
“Keep the prayers coming,” Guerra said. “First and foremost for Ashton, but also for myself, Johnny and our kiddos (Makayla and Tyson Vasquez). Being separated through something like this is not easy for any of us.”
To follow Ashton’s progress, you can follow postings made on the Facebook page: Ashton Avengers.