Parents prepare for the possibility of bringing their son home

Brendan Heidner
Thursday, January 9, 2020
Article Image Alt Text

One-and-a-half year old Braxton Brooks has spent almost his entire life in the hospital. His parents Trista and TJ are excited about the possibility of bringing him home soon.

After spending 597 days of uncertainty in the hospital, TJ and Trista Brooks are excited about the possibility of bringing their 1 1/2-year-old son Braxton home.

Braxton was born on May 21, 2018 with a rare genetic disorder known as Oculofaciocardiodental (OFCD) Syndrome. The disorder ultimately affects, as the name implies, the eyes, facial features, heart and teeth.

OFCD left Braxton born with no eyes, brain and heart defects, impaired hearing and a need for a ventilator to help him breathe.

On top of his genetic disorder, Trista also noted Braxton has a heart defect called Tetralogy of Fallot. The defect features four different problems: a hole between the lower chambers of the heart; an obstruction from the heart to the lungs; the location of the aorta (blood vessel) over the hole in the lower chambers; and the muscle surrounding the lower right chamber which becomes overly thickened.

As previsouly reported, at the beginning of 2019, TJ and Trista were unsure as to how much time Braxton had to live. They learned how to operate the equipment needed to take care of him and prepared to take him home and cherish the moments with him until he passed away.

Just two days after getting home last winter, however, the then-infant was life-flighted back to Billings due to complications.

Now a year later, Braxton remains in the hospital in Billings, but he may get to see home again soon and TJ and Trista hope this time it is for good.

Recently, Braxton’s doctors determined an open heart surgery for his heart defect may mitigate a few of his medical needs which re hospitalization.

“In October, the doctor said, ‘the only reason (Braxton) is on a ventilator is because his heart is bad. Let’s get his heart fixed and then he can come off the ventilator,’” Trista said.

Braxton was flown to Denver and received the open heart surgery on Nov. 19.

“It went wonderful,” Trista said.

Braxton was taken back to Billings on Dec. 4 for further medical care.

“We’re just now working on getting him off the ventilator so we can try to come home,” Trista said.

Although unsure as to when they will get to bring Braxton home to Glendive, they do hope that by spring it will be feasible.

Trista added in high hopes to have Braxton home, they are looking at a few different ways to prepare for tending to his medical needs.

One way is for Braxton to have his very own “Kid Kart.” As Trista noted, the kart is “a customized wheelchair for (Braxton’s) specifications.”

“It could hold oxygen, it will have a little IV pole, it folds up,” Trista said. “And it’s all measured for (Braxton) to fit him perfectly so it is easier for us to haul him around and all his equipment.”

Home nursing is also an option for the Brooks, however Braxton’s doctor mentioned it would not necessarily be required. If home nursing was part of the equation, Trista noted it would not need to be full time and could just be done every so often.

“They want us to have nursing once in a while to help,” Trista said.

In the end, Braxton is doing a lot better and TJ and Trista are excited for the opportunity to bring him home and continue to cherish every moment they get to spend with their son.

“He does a lot now,” Trista said. “He rolls over, plays with his toys, we’re just practicing learning to sit up on his own.”

Reach Brendan Heidner at