Belen baby is improving a year after undergoing open-heart surgery
BELEN — It’s been a long, hard 13 months for the Ortega family, but at the same time, they’ve been ecstatic watching their youngest son, Thomas, flourish — something they never thought could happen a little more than a year ago.
“We’re so thankful that we have our family together,” said Thomas’ mother, Marissa. “He’s not out of the woods, but he’s here and we’re all together.”
Thomas has only recently celebrated his first birthday but his short life has already been a constant cycle of hospital appointments, tests and procedures.
Belenites Tommy and Marissa Ortega discovered their baby boy had a heart defect at their 20-week ultrasound appointment. They were given the option to terminate the pregnancy — an option the couple never considered.
Thomas was diagnosed with having dextro-transposition of the great arteries, which is a birth defect of the heart in which the two main arteries carrying blood out of the heart — the main pulmonary artery and the aorta — are switched in position. He also had VSD, ventricular septal defect, meaning he had holes in his heart.
When Thomas was born on Oct. 5, 2020, the couple knew what to expect, but weren’t fully prepared for what was actually coming.
A few hours after Thomas’ birth, the doctors also diagnosed him with coarctation of the aorta, which is a narrowing or constriction in a portion of the aorta, meaning he had another hole on the top of his heart.
Thomas’ condition was too much for the doctors at Presbyterian Hospital in Albuquerque to handle, so they flew the baby and Marissa to the Children’s Hospital in Colorado.
The infant underwent open-heart surgery only eight days after he was born, but after the 11-hour operation, the surgeon told his parents he could only close one of the three holes in Thomas’ heart. He also told the Ortegas their son had developed an arrhythmia, he had lost a lot of blood and they couldn’t get his blood to clot or coagulate. He had gone into shock.
Thomas’ heart rate and blood pressure were dropping, and was losing a lot of blood through his chest tube. The only thing they could do was put him on a life support machine and wait.
As the days and weeks went on, Thomas began responding to treatment, and after seven weeks in the hospital, Tommy and Marissa were finally able to bring him home the day before Thanksgiving Day to meet his family, including his big brother, Wesley.
“We were very grateful that we were able to bring him home,” Marissa said. “We had a lot to celebrate last year. It was so nice to bring home our baby after questioning whether or not he would even make it.”
For the first time in weeks, Marissa said she was finally feeling like a “real” mom to Thomas.
“Honestly, it was so scary,” Marissa admits. “We brought him home on oxygen and he was still so tiny — he was 7 pounds when we brought him home. We were just scared — every little thing just scared us.
“He slept so much; he would sleep day and night,” she remembers. “There were times that I just couldn’t wake him up. My husband and I just couldn’t take our eyes off of him.”
Even though Thomas is home, his journey is far from over. He still has three holes in the lower part of the heart, but because they are very small, Marissa said the doctors thought they could possibly do more damage going in to fix them than just to leave them. They explained to the couple that as Thomas’ heart and muscles grow, the holes will slowly start to close on their own.
Since his return home, Thomas has gone back to Denver three times for cath procedures, where they place a stent to keep the artery open. He’ll have an additional procedure in early December, and Marissa said this will probably occur several times a year until he’s big enough for another surgery.
Thomas is also still taking a beta blocker three times a day help his heart beat more slowly and with less force.
The Ortegas are also grateful for all the help they’ve received from their home health care nurse, Abby, who at first would visit three days a week, and now only once every other week.
“She’s only a phone call away if I have a question,” Marissa said. “She is so amazing. Every time I call her if I think something is wrong, she comes right away.”
They have numerous appointments every month, from his chronic care physician to his pediatrician, and physical and feeding therapy. Thomas has also recently been diagnosed with craniosynostosis, a condition in which the soft spot on top of his head closed too early, causing problems with normal brain and skull growth. He is scheduled to see a neurosurgeon in January.
“He was also just delayed a little from being born premature,” Marissa said. “He just needed a little extra time to start rolling, and he started to crawl a week before his birthday. They really didn’t think he would crawl until he was a year and a half, and probably wouldn’t be walking until he was 2.
“But he’s already pulling himself up on furniture and he can walk along the furniture,” his mother said. “I’m thinking I’ll have a walking baby by New Years.”
Despite his health issues, Thomas, or Bubby as his 3-year-old brother, Wesley, calls him, is growing and changing every day. The two brothers play together, get in trouble together and love on each other every day.
“He’s not the same little baby we brought home a year ago,” Marissa said of Thomas. “He’s gaining his independence and he has his own little personality. He scrunches his nose when he doesn’t like something — it’s so cute. He’s starting to verbalize, and it’s so exciting.”
Although Thomas is still not out of the woods, Marissa and Tommy are thankful for their son and hopeful for his future. They’re also thankful for all the prayers and well wishes they’ve received from family, friends and strangers who have reached out to them over the past year.
“That’s what has helped the most,” Marissa said. “I know the power of prayer has made all the difference.”