Courtmon’s story: Hope, faith and expert care

Courtmon's dad, Luke, started a journal when he and his wife Megan were just 23 weeks pregnant.

The first entry was written after a trip to their midwife, who confirmed that Megan's water had broken – very early in pregnancy. They asked what this meant for their unborn child.

“I’m going to be honest,” the midwife told them. “This is not good.”

72 days of bed rest

The midwife sent Megan and Luke straight to their local hospital. The doctors put Megan on bed rest and shared the facts: About half of women go into labor within 24 hours of their water breaking. Almost all of them go into labor within a week.

They had a million questions. Megan was also crushed to realize that she would miss her twin sister’s wedding in two weeks – the first time that she and her sister would not be together for a big life event.

Luke, an actuary, did a deep dive into the numbers and the statistics. What he learned was terrifying.

“The goal was for Meg to carry the pregnancy until 34 weeks, when there could still be complications but the risk was much lower,” Luke says. “But the odds of her making it to 34 weeks were just so low."

The days in the hospital turned into weeks. Every day, Luke would take Megan outside in a wheelchair for fresh air. Megan tried to work from her hospital room so she had something to do. Their church group started meeting at the hospital chapel and friends came to play board games. Luke hardly left Megan’s bedside – except when he went to Oklahoma to deliver Megan’s matron of honor speech at her sister’s wedding.

At 33 weeks and 5 days pregnant – and after 72 days of bed rest – Megan went into labor.

“No one knew what to expect because it was so unusual for a pregnancy to last that long after the water broke,” Megan says. “Our baby came out screaming and for a second we thought he would be alright.”

But baby Courtmon was breathing hard and his oxygen was low. He was soon connected to machines to help him breathe and diagnosed with a condition called pulmonary hypertension.

A highly specialized team

When people hear “hypertension,” they often think of high blood pressure in the arteries that carry blood to the body. That’s different from pulmonary hypertension (PH), which happens when the pressure in the lungs is too high. PH is a serious condition that can lead to right-sided heart failure and life-threatening complications.

Most NICUs can treat pulmonary hypertension. But after eight days, the neonatologist at their local NICU told Megan and Luke that Courtmon’s pulmonary hypertension was very severe – and recommended transferring him to the Pulmonary Hypertension Program at Children’s Health.

“He told us Children's Health had highly trained specialists who were our baby’s best option,” Megan says. “So Courtmon was transferred via ambulance. It was surreal to watch because he was connected to so many cords and on so many medications.”

Soon, they met Megan Griffiths, M.D., Pediatric Cardiologist at Children’s Health. As a specialist in pulmonary hypertension and right-sided heart failure, her entire job is helping kids like Courtmon. She and Sushmita Yallapragada, M.D., Neonatologist at Children’s Health, would work together to create a care plan for Courtmon.

Dr. Griffiths and Dr. Yallapragada reassured Courtmon’s family that they see very sick babies all the time and have some of the best outcomes for pulmonary hypertension in Texas. They also had a state-of-the-art therapy option in their back pocket that’s not available at every NICU: extracorporeal membrane oxygenation (ECMO). ECMO is a machine that works as an artificial heart and lungs, breathing for a baby so their heart and lungs can heal.

When Courtmon’s ECMO evaluation came back, both doctors’ hearts sank.

“Courtmon was not a candidate for ECMO because he had bleeding in his brain,” Dr. Griffiths says. “I spent most of that Saturday pacing back and forth outside his room and tweaking one thing at a time, hoping that would lead to even a slight improvement.”

Everything we can do

Courtmon’s health continued to get worse: The right side of his heart was failing. He developed a lymphatic system abnormality that caused fluid buildup throughout his body. He was moved to the room reserved for the sickest babies. Dr. Griffiths kept pacing, weighing her options and wishing she had more hope to give his family.

“I told his parents that I care for kids with pulmonary hypertension all day, every day and that we were doing everything in our power to help Courtmon,” Dr. Griffiths says. “But there are some forms of pulmonary hypertension that modern medicine can’t treat.”

Luke and Megan leaned on each other and the nurses who hardly left Courtmon’s side. They also leaned on their faith to help them accept that they might be facing their son’s last day.

Courtmon’s care team kept fighting. They worked all night and decided to try additional pulmonary hypertension medications and a different ventilator that could help give his heart and lungs a little more strength.

That night, Luke and Megan fell into an uneasy sleep, expecting to wake up to bad news.

Instead, they received the opposite.

“In the morning, Dr. Yallapragada told us that he was a new baby,” Megan says.

Luke’s journal from that morning reads: His chest moved up and down smoothly with each breath. It was slow and beautiful – the most beautiful thing I had ever seen. His lungs were working.

A long road ahead

For the first time, Courtmon’s health was trending in the right direction. Dr. Griffiths remembers the morning the NICU team set a new goal for the day: Have mom hold baby Courtmon. Megan remembers that exact date – October 10.

“When you have a baby, all you want to do is hold them. But I couldn’t do that for weeks,” she says.

Courtmon needed a machine to help him breathe for many more weeks. Physical and occupational therapists came to see him regularly to help him move his body and build strength. And he needed a nasogastric (NG) tube to help him eat.

“I’m really grateful for the program that trained us to place the NG tube and could monitor his feeding progress remotely,” Megan says. “We would've had to be in the hospital for so much longer if he’d needed to be eating fully on his own before going home.”

After three months in the NICU – just before Christmas – they got the news they’d been hoping for: Courtmon could finally go home.

One year later

A year later, Courtmon is a smiley, happy one-year-old. He’s crawling, eating solid food and saying “mama” and “dada.” He especially loves going to work with his mom because she works for the Southern Methodist University football team and takes him to meet the players.

At a recent checkup with Dr. Griffiths, Courtmon’s heart showed no signs of pulmonary hypertension.

His parents, who are loving every moment they spend with Courtmon, have some advice for other NICU families.

“The NICU can feel lonely, but it doesn’t have to be,” she says. “Reach out to friends, lean on the nurses, take people up on their offers to bring you food or walk your dog. You don’t have to carry this alone.”

Luke hopes to publish his journal one day, sharing it with other families going through difficult times. The final entry ends like this:

When I think about everything that had to fall into place for our baby to come into this world and live, I can only think of one word: miracle.

Learn more

Children’s Health is home to leading experts who specialize in diagnosing and treating all forms of pediatric and congenital heart disease, including the most complex conditions like pulmonary hypertension. Learn more about The Heart Center at Children’s Health.