By looking at him, you wouldn’t know this 10-month-old baby was any different than any other. He is bubbly; aware his feet move; loves sucking on his finger and giggles heartedly when playing peek-a-boo.
However, he is different. He is hooked to a feeding tube, has a colostomy and has yet to digest solid food and is facing his third surgery since birth.
Fred and Sierra Fitzpatrick’s son, Brayden, is a miracle without a doubt. His tiny body has withstood a great deal.
“I was pretty healthy until I went into labor at 32 weeks,” said Sierra, Brayden’s mom.
An ultrasound showed he had started retaining fluid on his heart. The news was devastating.
Sierra was transported to Eastern Maine Medical Center in Bangor and delivered through Caesarean birth. Doctors placed the 3-pound, 11 ounce boy immediately on an oscillator (breathing ventilator) and inserted tubes into his tiny chest to drain the fluid.
“I just couldn’t believe it,” said Brayden’s dad, Fred, once he saw his son. “For anyone to have to go through that … wires hooked to him … how could he be alive with all of that.”
After four hours, Sierra finally took her baby boy into her arms at the hospital.
“I was so worried about what was happening to him and if he was all right,” she said.
But words cannot describe the feeling of holding your first child.
“It was awesome,” said Fred. “We were so thankful he was still with us. We didn’t want to put him back in the NICU — neonatal intensive care unit.”
Brayden’s doctor diagnosed him with hydrops-fetalis (a condition in the fetus characterized by an accumulation of fluid, or edema, in at least two fetal compartments) and chylothorax – blockage in the thoracic duct.
“Instead of fats going into his stomach, they were dropping into his chest causing it to fill with fluid,” Sierra explained.
Brayden is fed by total parenteral nutrition or TPN, which is a solution that supplies all the nutritional needs of the body by bypassing the digestive system and dripping nutrient solution directly into a vein. He is hooked up to the TPN 18 hours a day.
Brayden responded nicely to the treatment, so within a week or so, the fluid stopped filling him up, so the tubes were removed.
“Then all of a sudden, he got really sick,” said Sierra.
Brayden developed a fever and was placed back on the breathing machine. After running tests, it was determined that Brayden had E. coli in his blood.
“We were told even a healthy baby would have a hard time to withstand the infection,” Sierra said.
So, the doctors prepared the Fitzpatricks for the worst.
“They told us we would lose him in about 24 hours,” Sierra recalled. “We did not know what we would do if we lost him.
“We did not want to think about a funeral,” Fred added.
Within the 24 hours, Brayden started to rally, but his stomach was expanding.
“The doctors figured it was necrotizing colitis,” Sierra said.
Brayden should have been scheduled for surgery because if the doctors were right, bacteria was attacking his intestine. However, he was too weak from the infection for the doctors to operate. The odds of him coming through were under 50 percent. So, drains were inserted again. Brayden’s stomach was expanding so much it was tearing.
Within two weeks, Brayden was operated on.
“We thought this would take care of him,” said Sierra.
“The doctor brought us in and told us to take a seat,” Sierra said. “He told us he was sorry to tell us the operation did not go as planned. The bacteria was gangrened and it attacked pretty much all of his intestines.”
The doctor removed two-thirds of Brayden’s intestine, leaving what was salvageable. The doctor was unsure if the infection would clear.
With a trickle of tears from her eyes, Sierra said, “The doctor told us he could go peacefully with us there.”
So, the family gathered around Brayden’s bedside. At one point, Brayden stopped breathing. But, little Brayden is a fighter.
“He proved everyone wrong,” Fred added.
“He pulled through in 24 hours,” Sierra said. “But, the doctor was cautious saying he could still go downhill.”
The next few days were touch and go, as Brayden was on a ventilator and if he did not come around, they would have to decide to leave him on life support or not.
“He was still functioning,” said Sierra. “We just could not do it.”
“The nurses told us we’d know when it was time,” said Fred. “That he would let us know.”
Each day, Brayden grew stronger, but the reality was the same.
“The doctors told us there was nothing they could do even if he makes it,” said Sierra. “They said he will be on machines all of his life.”
The Fitzpatricks were not willing to let go of their little boy. They researched his condition and found a group of doctors in Boston. The doctor in Boston reassured the Fitzpatricks he had seen worse cases.
“That gave us more hope,” Fred said.
Again, nothing came easy for Brayden. He was in Boston for six months. He had not healed internally from his surgery in Bangor, so the doctor waited for two months before trying another.
“The doctor said he had 60 centimeters (of intestine) left,” said Sierra.
But, the intestine, especially in preemies, is still growing so after another month, the doctor operated on Brayden once more, attempting to reconnect the intestine, but leaving him with a colostomy.
After surgery, Brayden was still not able to digest his formula.
“That was a kick in the gut,” said Sierra.
After celebrating his first Thanksgiving and Christmas, the new year did not start well for the Fitzpatricks, as Brayden was life flown to Boston in January.
“He was really fussy one night,” recalled Sierra. “When we picked him up, he would laugh and smile. So, we thought he was fussy because he wanted us to hold him.”
Brayden’s temperature began to rise. First, 101.9. So a trip to the emergency room. His temperature climbed to 102.3.
With antibiotics started, Brayden was air lifted to Boston. Since the helicopter needed the extra fuel, the Fitzpatricks left their son with the air flight crew and drove to Boston.
“We broke down,” said Sierra. “We didn’t want him to be alone.”
The nurse on the flight kept in contact with the Fitzpatricks and when Brayden arrived in Boston, four hours ahead of his parents, the NICU nurses reassured them that their son was already flirting with them. He was smiling and laughing.
“We felt more comfortable,” they said.
While in Boston, Brayden was on a week of antibiotics and the doctor decided on ethanol lock therapy where a solution is inserted into Brayden’s feeding tube that will help deter infection.
Brayden underwent surgery on Monday, Feb. 9, to reverse the ends of the colon. The surgery should allow Brayden to live normally.
“We are keeping our fingers crossed nothing else happens,” Sierra noted.
The Fitzpatricks are handling the situation one day at a time, said Fred.
“We have been through a lot,” he said.
A fundraiser will be held Saturday, Feb. 21 at St. Mary’s church hall from 4-7 p.m. to help cover their expenses. For those who may not be able to attend, but would like to help my do so as an account for Brayden has been established at County Federal Credit Union (CFCU) in Houlton.
Editor’s note: The doctor in Boston will be writing a paper on Brayden’s case since it is among one of the rarest seen in Maine.
