Graham's story: 'He felt us'

Ashleigh Wilford can’t help herself. She bursts into tears every 15 minutes or so. She’s not crying tears of sadness. She’s crying tears of joy and an overabundance of the memories how far her little boy has come since her son's heart surgery two years ago.

On Feb. 2, 2016, Ashleigh and her husband David cried tears too, but this time it was waiting for their little boy to get through heart surgery.

It's amazing how far they all have come. 

When she was 20 weeks pregnant, Ashleigh Wilford went with David, her husband, for what was supposed to be a routine sonogram.

But during the visit, things didn’t go as planned or even hoped. The sonogram detected a possible heart condition. The concerned couple called Lisa Roten, M.D., a pediatric cardiologist at Cook Children’s Heart Center, to schedule a fetal echo cardiogram. Dr. Roten and her Fetal Echo Program team confirmed the initial diagnosis of a transposition of the great arteries.

Transposition of the great arteries is a rare heart defect in which the baby’s two main arteries leaving the heart are transposed. Because of this, he wouldn’t be able to properly oxygenate his own blood.

Since she found out about her baby’s diagnosis early in her pregnancy, Ashleigh was closely monitored and cared for by the Heart Center staff at Cook Children’s before her son was born.

Now, a plan could be put in place to prepare for the birth of their little boy – Graham.

“Throughout the pregnancy, they were preparing for him, which was a big burden off of us,” Ashleigh said.

Before the birth, however, both admit that there was no way to be ready for what was to come.

“I don’t think we really knew what to expect. We just thought ‘he’s going to be born, they’re going to fix it, and he’s going to be fine,’” David said.

After carrying Graham full term, the day finally came for Ashleigh to give birth to a 7 pounds, 9 ounce boy.

“I’ve wanted to be a dad for a long time. When I saw him for the first time, you’re just taken away by that moment because you see that new life,” David said.

However, their first few moments with Graham were fleeting. Within minutes, he was whisked off to the Neo-natal Intensive Care Unit at Cook Children’s.

“We had about five minutes with him. Talk about having a moment as a dad. David went straight from the delivery room to Cook Children’s and had to be strong for Graham and for all of us,” Ashleigh said.

In the first few days of Graham’s life, things seemed to be going fairly well. “Everyone kept saying ‘he looks better than expected after everything he'd gone through,’” David said. At 6 days old, Graham was ready for surgery with Vincent Tam, M.D., medical director of cardiothoracic surgery at Cook Children’s.

However, on the morning of his surgery, something unexpected happened. But this time it was a welcome surprise. Dr. Tam and his team told David and Ashleigh that they had a very important role that day, a role that ended up being an emotional, beautiful moment during such a scary time.

“One thing that we didn’t know we had the opportunity to do, but that the staff here was very adamant about, was us holding him before surgery,” Ashleigh said. “Until that point, holding him was too dangerous, due to the amount of lines that were helping keep Graham stable. They made sure that we had a good hour each. That was invaluable.”

Although Graham will not remember that moment like his parents will, he responded in a way that amazed everyone.

“Because of the medicine, you could tell he just wasn’t feeling very good. He was clenching himself in pain,” David said. “But when we would hold him, his numbers would level out. You could tell that he felt us.”

But then Graham was taken away from them, and the fear settled in.

“They gave us hourly updates,” David said. “Then they called at one point and said ‘everything is still fine, but we did another echo and saw something we want to go back in and fix.’ So they had to put him back on bypass.”

The entire surgery lasted about nine hours. But as hard as that day was for them, Ashleigh and David agreed that it was even more difficult to see Graham after the surgery.

“When we went back in after surgery, there was a piece of mesh over his chest, but we could see his heart pumping,” Ashleigh said.

“He was pale and cold… it was like he wasn’t alive,” David said. “Seeing a little 6 day old baby look like that… it was tough.”

However, the staff surrounding David and Ashleigh constantly made them feel reassured and comforted.

“It was the worst day of our lives,” Ashleigh said. “But even while experiencing the worst day of your life, it was comforting to see the CVICU nursing staff and the physicians so under control. They’re not panicked. They’re just working. So seeing them take care of him took away those initial gut feelings of ‘this is bad.’ Seeing how confident they were in treating him was a huge relief.”

Ashleigh is an employee at Cook Children’s. As a physician liaison, she spends her days informing doctors and health care providers throughout Texas about the specialties, treatment programs and physicians at Cook Children’s. Even before Graham's birth, she had promoted the fetal echo program at Cook Children's.

But now she speaks from first-hand knowledge the kind of care a patient can receive where she works.

“I can talk about the program and I’m able to explain it to people in a completely different way now,” Ashleigh said. “It has made me a better employee. I approach my job with a compassion that I don’t think I could have had until I was a patient family member.”

Graham made such rapid progress, however, that Ashleigh and David were not patients for long. Graham was at Cook Children’s just under three weeks before he was able to go home.

Two years after his surgery, Graham sees Scott Pilgrim, M.D., at Alliance Urgent Care and Pediatric Specialties every 6 months, which is near the Wilford’s home.

Graham is doing fantastic. We were recently told we could space our appointments out to every six months! And because of all the education we’ve received, David and I know what to look for and whether or not to call if we are concerned before then."

While their boy is still so young, Graham has already made his parents incredibly proud. His strength pushes them every day, amazing even them.

“I was told there is something about these kids that spend time in the NICU, they’re just fighters,” Ashleigh said. “It’s true. You can’t really explain it, but we can already see it.”

Written by Elizabeth Sparks