MILTON-FREEWATER — There is a lot to know about Braxton Corbett Tracy, but probably the most important thing to know is that he’s a fighter.
Born on May 29, Braxton has already survived two open heart surgeries. And he’s scheduled for another in October.
The baby suffers from HLHS — hypoplastic left heart syndrome. It’s a critical, congenital heart defect that impacts fewer than 1,000 infants in the United States every year, according to the Centers for Disease Control and Prevention.
No one knows why it happens, other than genetic and perhaps environmental risk factors, the CDC says. Those afflicted lack all or part of the left half of their heart, their mitral and aortic valves are unformed or tiny, their aortic arch similarly compromised.
This leaves the left side of the heart unable to pump oxygen-rich blood to the body properly. Once born, these babies suffer from breathing problems, pounding heart and weak pulse. And no one can say what quality of life looks like past the age of 40 for those born with HLHS.
These are just some of the facts Jacy and Sam Tracy had to start learning when they were halfway into their pregnancy with Braxton.
Something was wrong
For the Milton-Freewater couple, life seemed to be firmly on track. Jacy Wells, 22, and Sam, 24, met at church four-plus years before getting married a year ago.
Sam, originally from Ellensburg, works as a service technician for the McGregor Company. Jacy, born and raised here, has worked since high school for the Oregon Department of Agriculture, inspecting the apples that get shipped from area orchards to national and global markets.
Their wedding was “amazing” and things were going along according to plan, Jacy said.
“My pregnancy was beautiful. There were no problems at all.”
Until an ultrasound at 20 weeks said otherwise. While Jacy was excited about discovering the gender of her baby, the technician raised a red flag without intending to.
“She would look at something, then go back and take a picture of the heart, look at something, then take a video of the heart,” Jacy recalled.
“I thought ‘Well, it is a vital organ.’”
As they waited two weeks for the appointment to discuss the images with their doctor, the Tracys revisited the technician’s actions again and again.
“A lot of my friends were also having ultrasounds, and I kept comparing pictures of theirs and mine,” Jacy said. “You could tell something was wrong. Where his heart was supposed to be was a little black speck.”
In Spokane, with advanced imaging, the Tracys learned the heart diagnosis on the day that changed every plan they’d made. Things looked worse than their imaginations had been able to conjure.
“They gave me the option to terminate my pregnancy … they told us there was a very real chance Braxton wouldn’t be a candidate for or survive the surgeries he would need.”
The Tracys did know one sure thing — aborting their son was off the table, Jacy said.
New plans were made, including giving birth at Providence Sacred Heart Medical Center, in Spokane, for the intensive care Braxton would need, like the first trio of surgeries.
Operation No. 1 came two days after the baby was born, a procedure to compensate for that missing left half of his heart.
His mom said Braxton came through like a champion. Six days later, however, his health took a nose-dive.
“The doctors were really confused,” Jacy said.
It turns out Braxton’s heart is unusual even in the HLHS universe — he has about half of a left ventricle, and it’s trying mightily to do its job. After surgery, heart and man-made intervention were working against each other, which meant blood wasn’t getting to where it needed to be.
A temporary stent was put in place, but a bigger change was needed, Jacy said.
“They had to customize a surgery for his strange, little left ventricle. But they only gave him a 15 to 20 percent chance to survive it if they it did right then.”
So the stent stayed in place while Braxton gained strength.
On July 17, surgeons reconstructed the baby’s aortic arch, cutting it free, flipping it around, and putting his heart back together for optimum blood flow.
That operation left Braxton’s chest cavity open for four days, his heart covered with sterile dressings. Chest tubes stayed in for eight days, a ventilator was used for seven.
The load got bigger when first one lung collapsed, and then the other, leaving the baby in post-surgical pain with 30 percent lung capacity, Jacy said.
In the retelling of her son’s short life so far, Jacy took her own deep breath at this point, then spoke softly to the tiny boy.
Her job was to “beat on him” to get the lungs reinflated, she added.
“That wasn’t fun. That took about two weeks.”
In the meantime the littlest Tracy was getting all nutrition through a feeding tube, with no chance to nurse or use a bottle. Sam and Jacy had been warned most children with their son’s condition never nurse.
Braxton didn’t get the memo: when the family was finally able to come home in mid-August, he “just took off with nursing,” Jacy said with a laugh.
More to come
Another surgery is scheduled for the end of October, and family friends have organized a fundraiser to help with all the things Sam’s employer-provided health insurance doesn’t cover. That includes gas, lodging, some testing and X-rays. The latter is adding up, considering Braxton has two or three X-rays taken on some days, Jacy noted.
When the next operation is completed, her son should be free from heart surgery until he’s a preschooler, she said.
For now, there’s tummy time to conquer. Until his sternum fully healed from surgery, Braxton couldn’t lay face down. Now it’s time to strengthen those muscles, Jacy explained.
“He’s not impressed, needless to say.”
Jacy said her fervent wish is to raise awareness of hypoplastic left heart syndrome through telling Braxton’s story.
“I knew nothing about this, I had never heard of it,” she said.
“Many people don’t know that congenital heart defects occur in one in 100 U.S. births. So many kids are facing huge battles every day … Maybe if more people were aware, they’d willing to help out other kids like Braxton, who have big scars hidden under tiny shirts.”