Baby Amos is coming home again.
Amos Hertzler, an Amish child born with serious medical problems in Cattaraugus County 2½ years ago, has been receiving specialized treatment for the past 15 months in a Boston, Mass., hospital.
Now, Amos is returning home, family members said.
But, Amos’ treatment for a rare esophagus problem did not work out as his family and doctors had hoped.
The Buffalo News has been chronicling his case for more than a year, and many people from the wider community have responded to his story.
Amos’ esophagus was not successfully attached in Boston, his family told The News this week.
“They weren’t able to do what they wanted to do,” said Aaron Hertzler, Amos’ father, who spoke to The News by phone from Boston, as the family prepared to bring Amos home.
“It didn’t work out quite well. It kept leaking. They had to redo it, and it leaked again.”
Aaron Hertzler said his son will come home with a feeding tube, like the one he had before he went to Boston.
Amos will also be on oxygen to breathe, at least for a while, the family said.
Now, the Amish community in Western New York will hold another benefit for Amos, from 6:30 a.m. to 2 p.m. Saturday in the Otto Fire Hall.
A full Amish breakfast will be served, and donations will be accepted for Amos’ continuing care.
“People have helped us so much,” Aaron Hertzler said. “We are very thankful.”
In Boston, specialists had been attempting a complicated stretching and attachment procedure to attach Amos’ esophagus to his stomach.
Amos was born with Down syndrome and also a rare condition called esophageal atresia, which means he was born with an esophagus that did not connect to his digestive system.
The tow-headed, good-natured child has been unable to eat and speak normally since his birth in the fall of 2010, his parents said.
Breathing has also been difficult for him, and he has often relied on oxygen and a ventilator to survive, they said.
Traditional Amish like the Hertzlers, some of whom reside in outlying areas of the Buffalo region, live without electricity, central heating, running water and other modern conveniences. In the Hertzlers’ case, they were using batteries to power some of the devices they needed for Amos’ care.
Amos received care at Buffalo’s Women & Children’s Hospital before his parents decided to take him to Boston to seek further treatment – including the attachment procedure that they were hoping would have allowed him to eat, breathe and speak more normally.
The family said they were happy to be bringing Amos home even though the surgical procedure that would have fixed his atresia did not work as they had hoped.
“For most children, it works out,” Aaron Hertzler said of the attachment process.
“For a few children, it doesn’t work out.”
“He was just one of the ones that didn’t work out. It’s a complicated thing for anybody.”
The Hertzler family said Amos received good care in Boston, and they were happy they took Amos there to attempt the procedure.
According to the Hertzler family, they have paid the major portion of the more than $200,000 hospital bill that Amos has accumulated during his stay in Boston.
But another portion – likely in the range of $13,000 to $20,000, they said – remains unpaid.
That is why the Amish community is holding the breakfast benefit to help pay off the remaining bills, said Hertzler family members.
The breakfast will include pancakes, maple syrup, orange juice and hot cocoa, doughnuts, and sausage, said Noah Hertzler, Aaron Hertzler’s older brother and Amos’ uncle.
No set ticket price is being asked, but the Amish will take people’s donations toward Amos’ care, he said. The Hertzler family has established a fund in Amos’ name at Cattaraugus County Bank.
Amish handicrafts, including quilts, will also be available at the event.
Overall, the family is focusing on their happiness in welcoming Amos back home after more than a year away from Western New York.
“Maybe this good country air will help him out,” said Noah Hertzler.
Noah Hertzler emphasized the gratitude of the Amish toward those who have contributed to Amos’ care.
“I want to heartily thank people for the help they gave us so far,” Noah Hertzler said.
“The previous benefits did really well.
“We are so grateful to people for everything they have done for us.”
Aaron Hertzler, Amos’ father, said he and his wife, Katieann, plan to keep Amos at home for a year or two, to nurture him and see how he develops and grows.
Then the family may attempt another procedure to create an attached esophagus for Amos, he said.
“I guess we’ll cross that bridge when we come to it,” Aaron Hertzler said.
Amos’ sunny disposition has remained the same, despite his long hospital stay, his father said.
“He’s just a very happy little boy,” Aaron Hertzler said. “He doesn’t cry usually.”
“He does a lot of playing, a lot of kicking. He’s very active.”
The Amos Hertzler fund at Cattaraugus County Bank can be reached at (800) 882-9903.