‘It’s not as scary and sickening anymore:’ Bucksport baby’s plight captures hearts of a community

By Abigail Curtis, BDN Staff
Posted March 03, 2014, at 8:09 a.m.

BUCKSPORT, Maine — New parents Nicole and Benjamin Bustard of Bucksport embarked on an emotional roller coaster a few days after their son was born on Jan. 20.

Baby Eli, who was born a month early, had an unusually low body temperature and suddenly was lethargic and unresponsive. Something wasn’t right, but what was it?

That question began a medical ordeal that has lasted more than a month so far and that has been frightening at times for the young family. But through it, the Bustards also have realized that a lot of people are rooting for little Eli.

“We thought it was different pneumonias. Was something wrong with his heart? Was something wrong with his brain?” Benjamin Bustard, 26, said Friday from Boston Children’s Hospital. “Every time we go to a new hospital, we start all over again.”

Two weeks ago, Eli finally received a diagnosis that the family hopes will lead them to the right treatment. He has a laryngeal cleft, an opening between his larynx and his esophagus. It’s a rare disorder that happens in less than 0.1 percent of the population, according to the Boston hospital’s website, and means that food and liquid were passing through Eli’s larynx into his lungs.

A feeding tube now allows food to bypass the hole.

“Once we got a diagnosis, it was awesome,” his dad said.

But still, spending a month in various hospitals with a sick newborn has been a physical, mental and financial ordeal for the family. Benjamin Bustard manages a group home for adults with mental and physical disabilities in Orono, and Nicole Bustard works as a barista at Starbucks in Bangor. Though their employers are “really awesome” and the couple has health insurance, it will not cover all the medical bills, which have already totaled a quarter of a million dollars, Benjamin Bustard said.

Enter Eli’s cheerleaders.

Several people had offered to help the family with community spaghetti dinner fundraisers, Benjamin Bustard said. Others suggested they try doing an online fundraiser, which at first didn’t feel right to Eli’s parents.

“We don’t like asking for help. Then, we realized how much people want to help,” he said.

On Feb. 27, the couple set up a page on the website gofundme.com. They set a goal of $826 — the cost of staying in Boston for two weeks. The hospital only allows one parent to sleep at night with Eli.

“While the total seems large, every little part helps! $5-$10 for a meal, $30 so one of us can sleep on a real bed! (Last night was the first time I did that in a month and it was so good!) or $9 so our car doesn’t get impounded! Each and every dollar will be counted as a blessing!” the Bustards wrote.

Just one hour after the fundraising page went live, they had met their goal. And still, the money kept coming in. People whom the Bustards know, and many they don’t, had given them nearly $5,000 by Sunday night.

“Baby Eli’s story has captured the hearts of so many,” one donor wrote. “The hope and love surrounding his journey has shone brightly in what would have been a very dark winter.”

The financial support will be a big help to the Bustards. But more than that, they emphasized, has been knowing that people care about their little boy with the serious scowl, and want him to thrive.

“This has made us speechless,” Benjamin Bustard said in a thank-you video that he shared on the fundraising page. “We love you and thank you and are totally blown away by your support. Thank you to the people who have been praying and sending their love. It’s not as scary and sickening anymore.”

On Monday, they’ll talk to a doctor about how and when to fix the hole. Because he’s so small, the doctor may attach a feeding tube through Eli’s belly so that the Bustards can take their baby home so he can grow before having a robotic tracheotomy that will close the hole.

Nicole Bustard, who carefully cradled the tiny, sleeping Eli on the video, said that although people have told her that her son will never need to know the details of his medical ordeal, she wants him to know some things.

“We definitely plan to tell Eli eventually how awesome you guys are,” she said. “And how much support we had when he was little.”

To help Eli, visit www.gofundme.com/76hy70.

 

http://bangordailynews.com/2014/03/03/health/bucksport-babys-plight-captures-the-hearts-of-a-community/ printed on October 2, 2014