Against all odds
The incredible story of the Weichelt family and their three identical boys who spent months battling for their lives against an extremely rare virus (Photo courtesy of Laura Schmitt Photography/Laura Schmitt Hiller).
By Adam Hocking
STRATFORD — This is a story about a family of six. Looking at their picture, you see a lovely, young family, but in this case that picture does not come close to telling their story.
This is a story about Bryan and Stacey Weichelt; their nearly 2-year-old daughter Lily; and their identical triplets Logan, Mason, and Dylan. Identical triplets are, in themselves, an extreme rarity. Various sources put the odds of having naturally conceived identical triplets anywhere from one in 60,000 to one in 200 million.
The virus that the three boys contracted shortly after birth, human parechovirus type 3, is also exceedingly rare in terms of confirmed cases. The rarity of the virus may have been what contributed most to the ordeal that Bryan and Stacey have gone through over the last several months as they searched to find out what ailed their sons.
The boys endured extended stays in the Pediatric Intensive Care Unit (PICU), hours spent on ventilators and with feeding tubes down their throats, and a litany of blood tests, all while Stacey and Bryan could only sit and wait for answers.
The Weichelts found out Stacey was pregnant shortly after Lily’s first birthday.
“We were so surprised and excited,” Stacey said.
The ultrasound technician informed Stacey and Bryan that there were three babies and three heartbeats. The couple was in disbelief at the news. As the ultrasound technician left the room, Bryan and Stacey sat quietly, trying to process the idea of one baby on the way becoming three and the math of their family changing from three to six.
They then found out that not only were they having triplets but that the babies were identical.
“The day we found out we were having identical triplets we got a lottery ticket,” Stacey said. They did not win, but they figured they might be on a streak of defying the odds, so it was worth a try.
Stacey said their mindset quickly shifted from surprise to the logistics of how to handle three new additions to the family. They had just moved into a three-bedroom house in Stratford and did not have a vehicle equipped to handle a load of four children.
“It wasn’t so much shock or panic. It was more like right to the planning,” Bryan said.
Stacey’s pregnancy went along without a hitch, and the Weichelts had no idea that anything would be wrong with the boys. She carried the boys until 33 ½ weeks, and the average term for triplets is 32 weeks Bryan said.
The boys were born via cesarean section at 4:26 a.m. on Oct. 17, 2014.
Upon birth, the triplets went to the Neonatal Intensive Care Unit (NICU) at St. Joseph’s Hospital, which is standard for multiple babies. The boys spent three weeks in NICU, and during that time they grew and were healthy.
Something is wrong
Dylan was the first of the triplets to come home to the Weichelts’ residence in Stratford. Logan came home two days after Dylan, and Mason two days after that. In total the boys were home for about 10 days, and things seemed to be going fine.
Then on a Saturday in November, Bryan and Stacey began to notice that Dylan was lethargic. He was not finishing his bottles and appeared to be unusually tired. Over the next couple of days, Dylan’s symptoms did not improve, and on Monday, Nov. 17, his conditions became extreme.
Bryan was feeding Dylan, and it became obvious Dylan was not getting enough oxygen. Dylan’s skin even started to turn blue. Bryan and Stacey took Dylan to Marshfield Clinic in what would become the first of many weeks spent inside of medical facilities.
Dylan was admitted to PICU at Saint Joseph’s Hospital that day.
Dylan’s first night in PICU, staff tended to him “every five minutes the whole night” Stacey said because he needed constant stimulation and reminders to breathe.
“I just remember thinking it is so intense. He wasn’t even breathing on his own,” Stacey said.
As Dylan was being admitted to PICU, Logan and Mason started to show the same symptoms of lethargy and difficulty breathing.
“That same night, Stacey went in to stay with Dylan because he was admitted, and I was home with the other two when they started having the same issue,” Bryan said.
Bryan called Stacey and told her that he was going to bring the other two boys in to be examined. Bryan took the boys to the emergency room and told the medical staff, “Their brother is up in PICU. Whatever he’s got, they’re going to have the same thing. They’re following the exact same pattern.”
Logan and Mason soon joined Dylan in PICU, and all of the boys were put on ventilators to help them breathe.
Stacey said that one of the things that was confusing about the boys’ condition was that they lacked any other symptoms outside of lethargy and difficulty breathing.
“They didn’t have any fevers, no stuffy nose, no coughing, nothing. It was strictly just lethargy and troubles breathing. That was it,” she said.
Bryan said that on the second or third day in PICU the boys began having seizures.
“At that point we didn’t know if we would be taking them home at all,” Stacey said. “That was definitely our low point.”
Stacey told Bryan that she was not leaving the hospital until they had a diagnosis for the boys, but it soon became apparent that finding out what ailment the triplets shared was going to be an exhaustive process and that they might never get a true answer.
The first five days the boys were admitted Bryan and Stacey slept on cots in the hospital, and Lily stayed with her grandparents that live in the area. As the boys’ stay in the hospital stretched from one week into many, Bryan and Stacey established a routine of going to the hospital during the day and returning home in the evening to be with Lily to make things as normal as possible for her.
Tests, tests, and more tests
The boys were at one point treated for botulism, which, according to the Centers for Disease Control and Prevention, is a “rare but serious paralytic illness caused by a nerve toxin that is produced by the bacterium Clostridium botulinum.”
Stacey and Bryan said that, as odd as it sounds, they were rooting for the boys to have botulism simply so they would have a diagnosis and a resolution to their ongoing nightmare.
“It’s weird to root for something, … but we were really rooting for botulism because we knew they were treated, and we knew that if it was botulism, it’d be over with,” Stacey said. Botulism, however, was not what the boys had.
During this ordeal Stacey and Bryan also had their house tested for anything that could have caused a reaction from the triplets in the brief time that they were home.
They checked for radon and micro-toxins, they tested the soap that they use for dishes, they tested their well water, and they tested the fortifier that was added to the boys’ milk because they were born premature and were small.
“Everything that could be possibly tested was tested,” Stacey said.
Bryan and Stacey were told at one point that it was unlikely that any patient had come through Marshfield and received so many tests without an answer as to what was wrong. Late in December Bryan and Stacey were informed there was a chance that the boys would be going home without ever having an official diagnosis.
The boys all received blood transfusions because of the seemingly endless blood tests they underwent. The Weichelts were told the boys’ hemoglobin was low because of the amount of blood that was being drawn.
“That was heart-sinking too. Nobody wants to see a baby go through that. Every day they were getting their heels pricked and blood drawn,” Bryan said.
Dr. Edward Fernandez, a pediatric intensivist at Marshfield Clinic who oversaw the care of the triplets while in the PICU, said that they had to be very careful about how much blood they were taking and the intervals at which they took blood samples because of the strain it would put on the boys.
“Very quickly with a baby like Dylan, who weighs about four kilos, probably has about, I would estimate, 280 CCs of blood. Well, if you draw 20 or 30 CCs of blood for these tests, you very quickly are making this baby anemic,” Fernandez said. “We had to be very judicious about which tests we were doing.”
Stacey said that the boys were so lethargic that when they were put on a ventilator, the normal sedation that is given to patients to keep them from dislodging the apparatus was not needed.
“I’m not sure there’s anything more sad then watching them try to cough or cry with a ventilator down their throat. That was pretty tough to watch, and then when they finally took (the ventilator) out, then they would have a tiny, little, whispery whimper because their throat was so coarse from the tube,” Bryan said. “Finally, they would cry, and you were never so happy to hear a baby cry.”
At one point Logan aspirated some of his milk, and it clogged the breathing tube.
“The nurses reacted really quickly, ended up pulling the breathing tube out, had to do chest compressions, and (put a) bag over his mouth to keep him breathing,” Bryan said. He added that it was a terrible feeling “just standing there looking in through the glass, wide-eyed, watching people give chest compressions to your infant. That was tough.”
At this same moment, Stacey was getting her first chance to hold Mason in a very long time but had to put him down because of what was going on with Logan.
The boys’ first stint in PICU lasted about a month. They were then discharged to the general pediatric ward only to be readmitted to PICU two days later. The triplets then spent about another 10 days in PICU.
Bryan and Stacey described feeling powerless that they could do nothing to help their boys.
“It was just, it’s hard to explain. All this emotion, extreme stress, and then eventually you get to the point by week two or so, you just start to become numb,” Stacey said.
Bryan, who works for the National Farm Medicine Center, which is part of the Marshfield Clinic, used his relationships at work to try to reach out to anyone that might have an idea of what plagued the triplets. Stacey and Bryan also reached out on social media, looking for as many ideas as they could possibly collect.
Through half of November, all of December, and into January, Stacey and Bryan struggled with the notion that they might never know what was wrong with Logan, Dylan, and Mason. The triplets struggled for their lives.
Human parechovirus type 3
After months of frustration, the boys’ blood was sent to the CDC for testing.
On Jan. 8 the boys finally received a diagnosis. They had human parechovirus type 3.
Dr. Brian Chow, a pediatric infectious disease specialist at Marshfield Clinic, said that the version of parechovirus the boys had can impact the brain.
“Certain viruses, including parechovirus 3, do travel to the brain and cause a meningitis, (which) can cause seizures, and that’s because it can infect the cells in the brain,” Chow said. “This (virus) does have a certain affinity for going to the brain, particularly in young infants.”
Chow worked with the triplets initially and again became involved in the case when human parechovirus type 3 was discussed as a possible diagnosis. He added that it is not thought that the boys catching the virus had to do with their genetic makeup or the fact that they are identical triplets.
“Could this happen to a set of non-fraternal twins, fraternal triplets, or even a single baby? Absolutely,” Chow said.
Moving forward, Chow said that the long-term prognosis for the boys could be described as cautiously optimistic but is based on limited literature that the medical community has regarding the virus.
“Children tend to grow up and lead normal lives after having this infection. However, the numbers we have in case reports are very, very small. It’s hard to draw generalized conclusions based on the small numbers reported,” said Chow.
Dr. Keith Pulvermacher, the triplets’ current pediatrician, echoed a sense of cautious optimism for the boys. He said that because all three boys sustained a brain injury from the virus, there is a need to continue monitoring them and watch how they develop, though they seem to be doing better.
“They’re (the triplets) doing very well. They’re doing very well indeed,” Pulvermacher said. “They each had neurologic injury when they presented, and now it’s about seeing the plasticity of the brain and how it responds and how they rebound from here,” Pulvermacher said.
Both Pulvermacher and Chow said that the boys had “cleared” the virus, and it is believed that the virus is no longer in the boys’ systems.
Fernandez said that he wonders if many babies have had the virus before but went undiagnosed because little is known about it. The triplets were the first patients Fernandez had ever knowingly worked with that had the virus.
“I’m pretty sure that we’ve seen it before, but we just didn’t know enough to diagnose it,” Fernandez said. Chow noted that the amount of reported cases of human parechovirus type 3 probably numbers in the low hundreds worldwide.
Fernandez added that, like with most viruses, there is no treatment for parechovirus and that it is managed “symptomatically.”
The triplets were born on Oct. 17, admitted to the Saint Joseph’s Hospital on Nov. 17, and discharged on Jan. 17. These boys like to do things in multiples of three. Bryan and Stacey said that now that the boys are home, their personalities are starting to come out more and more.
“Mason is just kind of the happy, laid back one, easy going, which is good because you need at least one to be like that,” Stacey said. “Dylan is kind of a handful. … He’s the one that’s probably always in your arms.”
Logan, they said, is in between the temperaments of Mason and Dylan.
“I feel like they actually saved each other because we had two other babies to compare them to. If we just had one we would have thought, ‘Oh, maybe he’s just really tired. Maybe he just needs to rest,’ but we had Mason and Logan to compare (Dylan) to. He looked very different compared to the other two,” Stacey said.
She later added, “If it was just Dylan, we probably would have put him to bed, and he probably never would have woken up. That’s a difficult thing to think about.”
Bryan and Stacey said that now that they are home they have had a chance to reflect on what has happened to them over the last several months.
“We take it one day at a time,” Stacey said.
“It’s been a ride. That’s for sure. We’ve had our ups and downs over the last few months. It’s interesting because you’d think we would be just super thrilled and super excited. They’re home. They’re happy and healthy, but it’s kind of ‘wait and see,’” Bryan said.
“We still don’t know what the lasting effects are yet,” Stacey added.
Stacey said she and Bryan work with the boys every day to make sure they have enough stimulation and are thriving as much as possible while watching for any sign of developmental issues.
Stacey and Bryan also said that the Saint Joseph’s Hospital staff became like family to them.
“The staff at the hospital are awesome. They’re amazing. They saved three little lives,” Stacey said.
Stacey works for the School District of Marshfield as the food service director but is currently staying home with the triplets. Bryan has gone back to work at the National Farm Medicine Center.
In an effort to raise awareness and funds for research so families in the future can be spared the ordeal they went through, Bryan and Stacey have set up a fund through the Marshfield Area Community Foundation to support parechovirus research.
If you would like to contribute to this research, you may donate online at parechovirus.com, or send a check to the Marshfield Area Community Foundation at P.O. Box 456, Marshfield, WI 54449. Specify “Parechovirus Research & Awareness Fund” in the memo line of the check.