WACO, Texas (KWTX) A former high school coach in Waco is mourning the loss of his five-month-old son.
Cayley, Alex, and Jackson "Jack" Braig. (Courtesy photos)
Former Reicher football, soccer and track coach Alex Braig, 32, and his wife Cayley, 24, lost their baby last Monday due to complications caused by a rare disorder.
"We never got to take him home," said mom Cayley, who stayed with her son at three different hospitals from birth to death.
After being admitted in early June, Jackson "Jack" Edward Braig died at Texas Children's Hospital in Houston where he was being treated for Diamond-Blackfan Anemia: a bone marrow failure syndrome that causes heart defects.
The Braigs say within minutes of being born on May 9, doctors at Baylor Scott & White Hillcrest Medical Center knew something was wrong with Jack.
"Soon after birth they realized he was having some difficulty breathing, right when they handed him to me to hold," said Cayley.
Knowing he needed a pediatric ENT team, doctors immediately had the baby transported by ambulance to McLane Children's Hospital in Temple.
They ended up staying for almost a month, which came as a huge shock Cayley says, because her pregnancy went great.
"He was a little small--but I'm short--still, we got a fetal echocardiogram," said Cayley. "It showed he had a heart murmur and a small ASD (atrial septic defect), but it's actually pretty common and they close on their own in most cases, so we weren't really worried about it and neither were the doctors."
It wasn't until Jack was born that they started discovering numerous health issues.
"It was just a roller-coaster of happiness and then sadness," said dad Alex.
Every time they got bad news, Jack would seemingly recover, then have a setback--a major on June 4 caused the baby to be flown to TCH where he remained for the rest of his life.
There it was determined Jack had DBA, the cause of his heart problems and Pulmonary Vein Stenosis.
"They're related, but also very rare," said Cayley.
His parents said he was being treated by some of the best medical staff in the world.
"We were like three days away from coming home four different times," said Cayley.
However, the morning of Oct. 7, Jack's little heart gave out.
"We genuinely thought he was going to be okay," said Alex.
After having one of the best weekends yet with his son, Alex felt confident enough to leave the hospital and return to Waco for a new job--a few hours later, he got the call that Jack was being intubated.
"It was a pretty shocking thing to go from that weekend of watching football and playing and him laughing, he got a balloon he played with and kicked, and it was just such a surprise when they called us in the middle of the night," said Cayley.
Cayley, who was staying at a home they had to rent in Houston, rushed to the hospital to find them doing CPR on her son.
"I had just left hospital at midnight and he was playing and happy," said Cayley. "It was really, really hard, but also oddly peaceful, we were around hospital staff that had become like our family."
Jack made a huge impact on everyone there, Alex said.
"That turns into your family, you see them more than your family," he said. "I don't know that we could ever repay the people there for the comfort."
Although losing her son and being away from home for five months was difficult, Cayley said she enjoyed every minute of his life.
"It's hard to say that when it was all in the hospital, but for me it was just 'hanging out' with my baby most of the time just in a different way, you adapt to it," she said. "He was an amazing baby, and it was amazing getting to be his parents for as long as we got to be."
The Baylor graduate met Alex through a friend she worked with at Cricket's Grill & Drafthouse.
The couple married in June of 2018 and found out they were expecting that September.
They say they have no regrets.
"We did every single thing we could," said Alex. "You can just see in his eyes he was a happy kid, he taught me that there's love that you'll never know."
It's a love that kept Cayley away from home for five months; until Tuesday, she hadn't been back to Waco or her house since the day Jack was born.
"It was just really difficult for me seeing it all sitting there waiting for him, and him not to be there," she said.
Since most of their friends didn't get to meet Jack, they delayed his funeral services to give people a chance to be there to celebrate the life he had.
His visitation is from 5:30 p.m. until 7:30 p.m. Friday, Oct. 18, at Lake Shore Funeral Home, and his funeral is 1:00 p.m. Saturday, Oct. 19, at Renew Church, 6509 Bosque Blvd.
"We wanted it to truly be a celebration of his life," said Alex. "We want to get up there and talk and show them how amazing our son was, he's always going to have a ring of sadness around him, but that wasn't him, and that's not what we want people to know about him."
They describe Jack as a "controlling and fiesty" infant who knew what he wanted brought then closer together.
"The light he showed me, I mean, I love my wife, but I can't put into words just how strong and proud (I am of her)," said Alex. "The best gift I could give somebody would be to see her through my eyes."
Cayley put nursing school on hold to be with Jack.
She plans on returning to MCC in January, inspired by the NICU nurses who helped her baby.
"I know a lot of people would kind of be turned away from it after their kid went through it, but honestly it was an eye opening experience for me and I would absolutely love to work in that situation," said Cayley.
After more than a decade, upon learning Cayley was pregnant, Alex left Reicher for a job with more kid-friendly hours.
However, Jack's illness delayed him from starting a new job.
"I had to take care of my family," he said.
He recently started working again, but without income for five months, the couple used their savings to pay the mortgage on their home in Waco while they rented a home in Houston to be with Jack.
"Outside of the money--it's a lot, it's almost like a different life, an alternate reality," said Alex.
Once they get back on their feet, he says they want to help local families facing similar circumstances.
"The stress it puts on families being away...our end goal is to buy something down there to provide housing to Waco families, for free, who are fighting to keep their children alive, to help alleviate some of the stress," he said. "I can't cure Pulmonary Vein Stenosis or DBA, but what we can do, is we can help people in the same situation, and I think it's something we'll probably spend the rest of our lives doing because it's a need, I saw it, I know it is."
Through scientific research, the Braigs hope Jack's journey will help other children and their families from having to go through what they did.
"I'm sure the information they gained was invaluable, and it will be," said Alex. "I have no doubt that because of him, some other kids will live."
They're also hoping to raise awareness about DBA.
"It's something even a lot of doctor's don't see, especially not the way Jack had it," said Cayley. "It just fascinated everyone because he really shouldn't have been as well off as he was for so long."
Through genetic testing, the couple learned what Jack had was a spontaneous mutation and nothing that would be passed on to another child.
"I have no regrets with Jack, and we will definitely move forward and have more children, God willing," said Alex. "It will be scary at first but, because of Jack, I think we're more prepared."