Searsport couple's baby faces life-threatening disorderCouple seeking help with transportation
Searsport — A Searsport couple is seeking help from the community after their newborn son was diagnosed with a rare life-threatening disorder that doesn’t allow him to breathe on his own.
Korey and Amber Philbrick welcomed their newborn son, Victor, who was born Friday, Nov. 2, in Bangor. When he was born, Victor was healthy.
“He started breathing normally when he was born,” Korey said during an interview at the Philbricks' residence.
However, within only a few days Victor’s health began to take a turn for the worse, with doctors initially believing he suffered from a disconnected esophagus. After doing X-rays and putting a tube down Victor’s throat, doctors determined his esophagus was fine, Amber said.
It wasn’t long before Victor’s most serious issue was discovered after he began to cry and then stopped breathing.
“They had to resuscitate him. They did that a few times, and then they put in a ventilator tube,” Amber said.
When Victor was 6 days old, doctors decided to perform a bronchoscopy on him to determine if there was an issue with his airways. Amber said a scope was placed through her baby’s nose and fed down to his lungs. After the procedure was performed, Amber and Korey were told their son had congenital tracheomalacia –– a rare disorder that results in the cartilage in the windpipe not being rigid enough to keep the airway open.
“Any activity causes his airway to collapse,” Amber said.
Amber said the doctors told her there have been few cases of congenital tracheomalacia, with the most recent one occurring 15 years ago. In that instance, the baby suffered from additional complications and eventually died as a result. Both Korey and Amber said they are hopeful medical practices have advanced enough in 15 years that their son can be saved.
“They will do whatever it takes to save his life,” Amber said.
Because of the severity of Victor’s case, Amber and Korey said, it is most likely their son will require surgery, but until then he is being kept sedated, so that he doesn’t pull out his ventilator tube, Amber said. However, the Philbricks said there are concerns that their son will become dependent on the ventilator if he is kept on it for too long.
Even though Victor’s congenital tracheomalacia is severe, the Philbricks said they are fortunate he doesn’t have any of the other complications that are associated with the disorder, such as heart defects.
“He’s a perfectly healthy baby boy,” Amber said. “He just can’t keep his airway open.”
Since he was born, Victor has been transferred from Bangor to Portland, where he will stay for the foreseeable future, Amber said. There is a possibility that he could be transferred to Boston, but that depends on what the doctors decide needs to be done to correct his problem. The Philbricks would like to see their son more often, but because they lack transportation they can’t get to Portland on a regular basis.
Further complicating the issue is the fact that Korey is disabled and in a wheelchair, and Amber does not work — staying at home to assist Korey. The couple do not have any family in the area, since Amber relocated from Georgia.
Despite their difficulties, the couple said they will work around whatever arrangements can be made. Ideally, Korey said, they would like to be able to visit Victor every two to three days if possible.
Amber and Korey can be contacted at 548-6648 or by cell phone at 207-505-6294. They can also be contacted by email at email@example.com.
Republican Journal reporter Ben Holbrook can be reached at 338-3333 or at firstname.lastname@example.org.