Eastport boy waits for heart donation

One young boy from Eastport who has been battling health problems from birth is impatiently waiting for a new heart at the Boston Children's Hospital.
"He's been absolutely amazing through years of ups and downs, but he wants to be able to go to school and play kickball like other kids," says proud mother Kristy Tidwell of her 9-year-old son, Donavin Clark. "It's been a crazy roller-coaster ride for him and the rest of the family."
Donavin was diagnosed with hypoplastic left-heart syndrome and has undergone multiple cardiac surgeries culminating in single ventricle circulation. He also has a pacemaker for high-grade heart block, severe systolic dysfunction of his single ventricle and is currently on IV milrinone infusion via a PICC line.
Tidwell was living in Pensacola, Fla., when doctors spotted a problem with the growing baby inside her at 37 weeks. "First, they said it was crappy ultrasound, and at first no one would give us an answer. Then they sent me to a doctor who does high-risk pregnancies, and in two days we found out that Donavin was going to have a lot of heart problems," says Tidwell.
Once her son was born, Tidwell says she and her family went through a lot of ups and downs with his health, and Donavin continued to decline, had to undergo more surgeries and was placed on the transplant list as 1B -- the second-highest priority.
The family had been traveling six and a half hours one way from their home to the hospital, and when Hurricane Irma threatened to take out their electrical power, which was needed to keep Donavin's very expensive medications refrigerated, the family decided to make a big move.
"The Maine relatives had been saying to come, so we loaded up and filled up, and it was like a whole other world," she stresses, with so much support from the family and the community, which has rallied behind them.
"He has a 40% chance the doctors will be able to accept the offer for a heart when one becomes available," says Tidwell of the current situation. "The high risk of rejection is because of his antibodies." Donavin is now listed as 1A, or highest urgency to receive a heart.
While they are at Boston Children's Hospital, she says that she tries "to make sure the kids come every two weeks from home to see their brother, and it was nice to have a teacher stop in. But it's been like this his whole life, so he doesn't know what normal is. Lately, he's been putting on headphones when the doctors come in because he doesn't believe anyone anymore when they say they can help. He doesn't want to get his hopes up."
"We get scared if something changes in his condition -- today or tomorrow -- and he can't be a candidate for a new heart."

Help from family and friends
One of the Clark family's most devoted members has been Donavin's grandmother Kathy Hooper of Eastport. "I try to do whatever I can to babysit Donavin's siblings Aaron and Austin, Kristen and Isabella," she says.
"There is strength in the connection I have with them," adds Hooper. "I went down to be with them three different times when Donavin was having surgeries in the St. Petersburg, Fla., hospital."
"Kristy actually has support on both sides of the family, as well as support from the community when they lived in Florida. It was a small area where they lived, but everyone there was very caring."
Hooper says the family had been living in a trailer in Florida and decided to move to Maine so they wouldn't have to worry about Donavin’s refrigerated medicine going bad if the hurricane knocked out the power.
Hooper notes that Stronghearts has assisted the family with some costs. Stronghearts was founded by Brian and Sue Duffy of Perry after their newborn son Seamus died from a congenital heart defect, and the organizations supports families with children struggling with congenital heart defects.
To help raise additional money for Donavin Clark's family, there will be a Chinese auction from 2 to 6 p.m. and spaghetti supper from 4 to 6 p.m. on Saturday, April 21, at the Eastport Elementary School. Among the auction items is a round-trip ticket to anywhere in the U.S.
Shelly Warren, who is organizing the event, describes Donavin as a "sweet and loving 9-year-old boy" who needs a heart.
"His mother Kristy has made the hard decision to move down there to live with him in the hospital in Boston, which leaves one income. While they wait, his brothers and sisters are going to Boston every chance to see their brother."
"Any money raised would go straight to travel expenses, medical bills and everyday bills."
Those who would like to make donations to the auction can call Warren at 214-4435. Warren and Tidwell both state that the family is extremely grateful for all of the support that the family has received.