Rare MCAD Diagnosis at CHRISTUS Children's Saves Baby Sonny's Life

Rare MCAD Diagnosis at CHRISTUS Children's Saves Baby Sonny's Life

Thanksgiving Day 2024 was one this family will never forget. Coleman and his fiancé, Audrey, learned they were expecting their first baby.

"It was awesome," Coleman said. "Everything was great. We were super excited."

The monthly that followed were filled with hope and anticipation. Early appointments showed a healthy pregnancy. They dreamed of Sonny's nursery, pictured tiny clothes folded neatly in drawers, stuffed animals waiting in the crib and shelves filled with baby books. Every little detail mattered and they wanted to give their baby the best start possible. 

Stillness in the Third Trimester Felt Like a Warning

As Audrey entered her third trimester, she grew increasingly concerned. There were times when Sonny's movements would stop for hours. 

"There were days when Audrey didn't feel well and barely ate," Coleman said. "Then Sonny wouldn't move for six or eight hours at a time, and we were freaking out. But when he did move, he kicked so hard he'd get her right in the ribs."

Each time this happened, the couple rushed to the hospital. 

"It happened four or five times," Coleman said. "We'd drive in convinced something was wrong, but by the time we got there, he'd perk back up. The doctors would check him and say everything looked fine, so we just held on to that."

Why Sonny's Quiet Demeanor Was a Sign of a Rare MCAD Disorder

Sonny arrived on July 28, 2025, at Guadalupe Regional Medical Center, weighing six pounds and measuring 21 inches long. He seemed to be a perfectly healthy newborn. 

"He latched and breastfed right off the bat," Coleman said. "He was chill, just hanging out. He wasn't even crying during blood draws. I thought it was odd, but I figured maybe we just had a super chill baby. Looking back, that was a warning sign."

The family left the hospital less than 48 hours later. On the drive home, Sonny remained calm and quiet at first a relief, but by night, worry returned.

"He wouldn't breastfeed or latch from 10 p.m. to 11 a.m.," Coleman said. "He wouldn't cry or keep his eyes open. His cry was weak. Audrey knew something wasn't right and pushed us to call the doctor. I praise her for that."

By morning, their pediatrician urged them to bring Sonny in immediately. "She said she didn't like how he looked or acted," Coleman recalled. "She told us it was urgent to get to the hospital."

When they arrived, Sonny's temperature had dropped to 93 degrees and his blood sugar was just 15. "He was exhausted and had to blood sugar," Coleman said. "They tested him for everything, but it all came back negative. He was just in limbo."

Doctors stabilized him and transferred him to the NICU at Methodist Hospital in San Antonio, where he received IV nutrition since he couldn't eat on his own. Over the next few days, test after test brought no clear answers until Sonny's newborn screening results came in. 

The results raised suspicion for Medium-chain acyl-CoA Dehydrogenase Deficiency (MCAD), a rare genetic disorder that prevents the body from breaking down certain fats for energy. Babies with MCAD must be fed frequently to prevent life-threatening drops in blood sugar. Both Coleman and Audry were found to be carriers of the gene, giving Sonny a 25 percent change of inheriting the condition. 

After his initial evaluation, Sonny was transferred to CHRISTUS Children's in San Antonio, Texas, for specialized metabolic care. 

CHRISTUS Children's Specialist Provides a Manageable MCAD Plan

At CHRISTUS Children's, the family met Dr. John Odom, medical director of the Metabolic Genetic Clinic, who became a crucial figure in Sonny's care. 

"When we met Dr. Odom, he explained what MCAD was and what life would look like," Coleman said. "Honestly, he just needs to eat and that was such a relief for us. He wasn't sick or fighting for his life; he just needed to ear. It finally let us relax a little. We knew we had this."

"Babies with MCAD can stay very healthy as long as they don't go too long without eating," Dr. Odom explained. "Their bodies can't break down certain fats for energy during fasting, so regular feeding is the key to keeping their blood sugar stable and preventing complications. With the right plan, these children can grow and thrive just like any other baby."

Dr. Odom helped translate complex medical information into a manageable care plan that Audrey and Coleman could trust. He guided their feeding schedule and outlines a long-term monitoring plan to keep Sonny healthy and ensure he would never go too long without nourishment. 

"He lets us know when he's hungry," Coleman said. "Nine times out of ten, he will wake us up. Now he's cluster feeding a lot. We feel good that we can manage this."

Caring Hands in the CHRISTUS Children's NICU

Coleman and Audrey say the NICU team at CHRISTUS Children's changed their lives.

"All of our nurses were absolutely fantastic," Coleman said. "They were patient, helpful and they even went out and bought a Dr. Brown's bottle just for him. That was the only bottle he liked during his whole NICU stay."

Nurses also created small keepsakes, personalized signs and gifted clothing for Sonny, reminders of his progress and strength. By the time he life the NICU, he had gained a full pound, growing from 5 pounds, 14 ounces to 6 pounds, 14 ounces.

No Longer Fighting for His Life

"He eats voraciously now," Coleman said. "He chomps down, loves his bounces, eats, sleeps and is spoiled rotten by my mother."

Every day feels different now, they said. "He was picking his head up at just wo or three days old," Coleman added. "He's super strong and already growing out of his newborn clothes. It's night and day from the baby we first brought home."

When we asked what he wants others to know, Coleman's gratitude is clear: "We are very thankful we didn't end up in the statistics of miscarriage or death. Because of Audrey's diligence and the incredible care from our doctors and nurses, Sonny is here. The beginning stages are terrifying, but we got through it."

Audrey added, "I am thankful to our Lord and Savior, Jesus Christ, for protecting us and guiding the medical staff. I am beyond grateful to everyone who helped Sonny and me. What I can say to parents and expecting parents is to always trust your gut. It's better to be seen and have nothing wrong than to ignore it and face the worst. You are your child's voice when they don't have one. God put us here to raise and protect them, so always trust your gut. If you think your child has MCAD, do not let them fast. If they won't latch, use a bottle and seek medical attention."

To learn more about the specialized care available at CHRISTUS Children's and the support offered for families facing rare genetic conditions, visit Clinical Genetics in San Antonio at CHRISTUS Children's Hospital. 

 

 

 

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