CHRISTUS Children’s Skilled Hands and Loving Hearts Bring Hope and Healing to Mariyah
But at week 31 of her pregnancy, everything changed. During an ultrasound, she learned her baby girl had a heart condition. Mom had very little time to make a decision about whether she wanted her baby to have a transplant or three future complicated surgeries to repair the baby’s heart.
A week later, God took the decision off Marquette’s shoulders. Her baby’s heart rate dropped suddenly and she underwent an emergency Cesarean section at 32 weeks.
Mariyah Shantel Irby made her appearance in a Memphis hospital weighing in at 4 pounds, 6 ounces on Jan. 26, 2017.
“She was small and her lungs hadn’t formed completely, but she didn’t need oxygen right away,” Marquette explained. “I was told she would need to be intubated and have surgery immediately after she was born. But we found out we had a bit of time where she could stabilize in the NICU.”
Surgeries No. 1 & 2
Mariyah had her first open heart surgery when she was 4 ½ months old and was discharged from the hospital at the seventh month mark. Unfortunately, soon after her first birthday, the baby caught a simple cold and her oxygen levels dropped quickly.
That’s when Marquette said the doctors told her something was going wrong.
Mariyah was readmitted to the hospital in Memphis and was intubated. “She had to have the second heart surgery right then. I was so scared. I thought I was losing her at that point,” Marquette said.
After the surgery, Mariyah's head began to swell and she needed to have brain surgery to drain fluid. A shunt was inserted in her skull and the baby was kept in the NICU in Memphis for another six months until she was almost two years old. She left with a tracheotomy because she couldn’t breathe on her own.
Heading to San Antonio
At this point, Marquette knew she had to make a decision. “The doctors at the hospital in Memphis didn’t think Mariyah would survive the second surgery so they weren’t willing to do the third. That’s when I decided to get another opinion from another hospital.”
She took to the web and did plenty of research about the best pediatric heart surgeons and narrowed her choices to Washington DC and San Antonio. Marquette said she is so happy she chose the latter.
The family moved to San Antonio in December 2019 and Marquette quickly set up a slew of doctors’ appointments. First up was a visit with a neurosurgeon at CHRISTUS Children’s. What was meant to be a post-brain-surgery checkup turned into much more. After seeing how swollen the baby’s head was more than a year after brain surgery, the doctor admitted Mariyah to the Pediatric Intensive Care Unit immediately.
“The doctor at CHRISTUS Children’s blew my mind. She told me the shunt Mariyah had in her brain wasn’t working properly,” Marquette said. “She told me she needed to do a shunt revision. I was so scared but I said, ‘if that’s what she needs, let’s do it.’”
Mariyah underwent a second brain surgery to complete the shunt revision in early 2020 and the results were quickly apparent. The swelling reduced and, a week later, Children’s doctors told Marquette she could take her baby home.
“But then her oxygen stats dropped and her heart rate dropped at night. She got COVID-19 in the hospital. It was a complete mess. She wound up staying another week in the hospital before going home,” Marquette said.
This time around, she added, being at CHRISTUS Children’s made all the difference. When she was in Tennessee, the hospital didn’t assist with her arranging post-discharge care at home, she said, noting she was completely alone with two rambunctious kids and a sick baby hooked up to machines.
“Children’s sent us home with a CPAP machine and machines to help feed Mariyah,” Marquette said. “They made sure I had everything I needed. I didn’t know what any of these machines were until I got to CHRISTUS Children’s. I saw every specialist I needed to see. They made sure I knew exactly what was going on and that I understood what was going to happen going forward. I finally felt hopeful. I could breathe finally.”
Getting Ready for Surgery No. 3
Next, Marquette turned her attention to the inevitable – the third of the three required heart surgeries that would hopefully repair Mariyah’s heart condition and put her on the road to permanent recovery.
It was the summer of 2020 and Mariyah finally was seen by the cardiologist Marquette moved to Texas to see. The news wasn’t good.
During an initial examination in the cardiac catheterization lab, the doctor discovered more revisions were needed. After the procedure, Marquette was told to take her baby home to grow stronger and gain weight in advance of the third heart surgery that Mariyah needed.
Marquette worked closely with CHRISTUS Children’s nutrition team to help Mariyah gain weight. At that time, the 3-year-old weighed 26 pounds. To be able to have the third heart surgery, Mariyah needed to be 32 pounds.
From mid-2020 to Spring 2023, Mariyah went in for weight checks every six months and her heart was checked several times, as well. Finally, Marquette received the news she was waiting to hear. At a pediatrician’s appointment, Mariyah weighed in at a strong 35 pounds. She was six years old and ready for the third, and hopefully, final heart surgery.
It’s “Go Time!”
After getting word from Mariyah’s cardiothoracic surgeon Victor Bautista-Hernandez, MD, that it was “go time,” she was checked into Children’s on Aug. 29, 2023, and the third heart surgery was performed on Sept. 6.
During the surgery, Marquette waited but she was never alone. “The nurses on the heart surgery team were absolutely amazing. They gave me a way to contact them directly if I felt scared or had any questions,” she said.
After a grueling 10 hours of waiting, Marquette was told Mariyah was doing well.
Marquette said she feels a sense of relief now that all the surgeries are, hopefully, complete. “I was told my baby might not survive the last surgery by the doctors in Memphis. But the CHRISTUS Children’s team never doubted it.”
For Mariyah, the Future is Bright
Mariyah celebrated her seventh birthday in January 2024. She has taught herself many languages, including French, German, Spanish and Italian, and plays games in foreign languages. She loves puzzles and gets excited whenever she sees other children playing outside.
She also enjoys spending time with older siblings Lakeria, 11, and Christopher, 3. Mariyah is able to use sign language to communicate with her mom which she never hesitates to do. “She is the smartest kid ever,” mom gushes. “She can’t wait to be able to do everything.”
The time for that is just around the corner. Mariyah has already started speech and occupational therapy. She will soon be ready to have the trach removed. Additionally, physical therapy to get Mariyah up and walking without assistance is scheduled to begin soon. At the moment, she pulls herself up on a small trampoline and is able to jump.
Mariyah loves every one of her doctors at Children’s. “She claps and high fives them every time she sees them,” mom said. “We both feel the heart team is amazing. Believe me, I’ve worked with many heart doctors. CHRISTUS Children’s are the very best.”
In fact, Marquette is quick to talk about the care she and her family received at Children’s. “I tell people whenever I can: If your child needs healthcare and you can get to Texas, come to CHRISTUS Children’s.”
To learn more about the Heart Center at CHRISTUS Children’s, please visit: https://www.christushealth.org/locations/childrens-hospital/heart-center
