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Winsted infant has rare liver disease; will need transplant
March 14, 2011
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By Linda Scherer
Staff Writer

WINSTED, MN – Since the arrival of Kyle and Jackie Thompson’s identical twin boys, Grant and Zachary, eight months ago, life at their Winsted home has been extremely busy.

The couple both work and go to school and try to juggle their schedules so one of them can be home with the boys whenever possible.

They are hoping to keep things as normal as they can, for as long as they can, until they get the news that it’s time for Grant’s liver transplant.

“We know our life is going to change drastically,” Jackie said, “so we are very happy to be home right now because it’s going to be a lot different for awhile.”

Grant was diagnosed with a liver disease called biliary atresia when he was 7 weeks old. Biliary atresia is a blockage in the tubes (ducts) that carry a liquid called bile from the liver to the gallbladder.

There is no known cure for Grant’s condition. It’s very rare, with about one in 10,000 to 20,000 babies in the US affected each year. The only effective treatments are certain surgeries such as the Kasai procedure or a liver transplant.

When Grant was 7 weeks and 6 days old, he had the Kasai procedure, which is recommended to be done before the child is 8 weeks old for the best chance of success.

With the surgery, the Thompsons were told there were three possible outcomes. One-third of patients will never need a liver transplant, one-third will need a liver transplant after a couple of years, and one-third will need a liver transplant right away, according to Kyle.

“Unfortunately, we were in the one-third that needed it right away. So basically, you could say the Kasai failed,” Kyle said.

The doctor told the Thompsons when Grant’s bilirubin got to 10 he would be put on a liver transplant list.

“But he got to 10 and he is still so happy and he doesn’t act sick, so now we are just kind of waiting,” Jackie said. “We know it will happen. From what I have read, it usually happens between nine months to a year-and-a-half, so we are thinking probably sometime in June.”

One of the reasons the doctors are waiting to perform Grant’s liver transplant is to give him time to gain weight.

Grant has a feeding tube used at night for about 12 hours, giving him an additional 18 ounces of formula to help him with his weight gain.

“Before he got his feeding tube, he was starting to get lethargic,” Kyle said. “He was throwing up a lot of his meals because his liver is so swollen and it was pushing on his stomach.”

Since he had his feeding tube put in in December, he has gained about 5 pounds. The Thompsons are hoping he will gain another 10 pounds before the surgery.

There is a good possibility he will come close to that weight, if the twins cooperate and leave the feeding tube in.

According to Jackie, the tube has been pulled out about five times. Zachary has to be watched when he is around Grant because he likes to pull it out and if he doesn’t, Grant has done it, too.

Each time the tube comes out, it means the parents have to make a trip to the hospital to have it put back in.

When it comes out on the weekends, it means Grant goes several days without additional nourishment because there aren’t any doctors available on the weekends to put the tube in.

“That part is stressful,” Kyle said. “They do the best they can down there and we do the best we can here, but he is just a little kid and he won’t stop moving so it’s hard.”

Doctors have suggested replacing Grant’s current feeding tube with a gastrojejunal feeding tube, a minimally invasive, image-guided technique in which a special soft feeding catheter is placed through an existing hole in the stomach (gastrostomy) into the small bowel.

“We have been talking about the pros and the cons,” Jackie said. “It would be another surgery and the risk of infection is high, but at least these two would be able to play together.”

It would also give the parents less worry, because they are afraid the tube will wrap around Grant’s neck during the night and choke him. Both Kyle and Jackie are up many times during the night checking on him.

Although this is a difficult time for the Thompsons, there have been many positive things to help make their situation easier for them.

They have nothing but great things to say about the hospital and its doctors

“Our health care in this state is amazing,” Kyle said. “It’s expensive, but the care is amazing.”

When Grant gets his transplant, it will be done in the new University of Minnesota Amplatz Children’s Hospital. The entire hospital is dedicated to pediatrics with private rooms so family members can stay with their child.

“We will have to be in the hospital for several weeks, and that will make it easier,” Jackie said.

Another resource Jackie has found helpful is social networking with other parents with children who have this disease.

She even toured the University of Minnesota Amplatz Children’s Hospital with one of the moms she met online.

Kyle’s and Jackie’s families and the community have also been very supportive during this time, ready to help out whenever needed.

And the Tim Orth Foundation, which assists children in west central Minnesota with medical expenses, has provided a gas card to use for the many trips to the doctor the family has had to make.

“This is a nerve-racking time because we know one of Grant’s next appointments is going to be the one that they are going to say, ‘alright, it’s time,’” Kyle said. “So, we wait.”

While they wait, they are enjoying the time with their twins.

Kyle has been teaching Zachary and Grant how to pitch a fastball.

“They can throw pretty good, but they can’t catch very well yet,” Kyle said, just before Zachary caught the toss. “I think about maybe twins playing for the Twins,” Kyle said with a smile.

Besides being interested in baseball, the boys like to spend time in front of the TV watching football games.

Jackie commented about how engrossed they are, even at their young age, watching football games with their dad.

“Most days, you look at them playing and you forget,” Kyle said. “I don’t even remember six months ago when he had the Kasai. You start over every day. Some are good days and some are bad.”

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