A Father's Heart: Overcoming Loss and Finding Strength

In December 2016, Blake Mills faced unimaginable tragedy when his newborn son, Paxton, passed away from a severe heart defect. Amid the heartbreak, Blake discovered that his own congenital heart condition required urgent attention. In a remarkable twist of fate, the same surgeon who had operated on Paxton performed Blake’s successful surgery 14 months later.

As one door closed with the loss of Paxton, another opened, bringing hope and healing to Blake through the skilled hands of the surgeon who became the common thread in their journey.

Hypoplastic Left Heart Syndrome

Paxton was born with a rare and serious heart defect called hypoplastic left heart syndrome (HLHS), in which the left side of the heart is underdeveloped. This condition prevents the heart from effectively pumping blood to the body, forcing the right side to compensate by working harder to pump blood to both the lungs and the body.

Each year in the United States, approximately 929 babies are born with HLHS.

Babies with HLHS usually need surgery or other medical interventions soon after birth to improve blood flow and oxygen delivery. Paxton underwent the first of three surgical procedures to treat HLHS by pediatric cardiothoracic surgeon Dr. Harold Burkhart, M.D., professor of surgery and Chief of the Division of Cardiac, Thoracic and Vascular Surgery at the University of Oklahoma College of Medicine and director of the Pediatric Cardiothoracic Surgical Program at Oklahoma Children's Hospital. The first surgery, known as the Norwood procedure, is usually performed within the first few days of life, to create a new pathway for blood to reach the lungs and body.

Despite a successful surgery, Dr. Burkhart discovered that Paxton had an underdeveloped right coronary artery that was unable to support his heart. Paxton died at just 25 days old — a couple of weeks after undergoing the Norwood procedure.

Worrying Symptoms for Blake

Blake was born with an atrial septal defect (ASD) — a hole in the wall between the two upper chambers of the heart. This hole lets blood from the left side of the heart mix with blood from the right side, causing the heart and lungs to work harder than normal.

ASDs develop as the heart forms during pregnancy, and about 2,000 babies are born with them each year in the United States.

The severity of an ASD varies depending on its size and symptoms. Small ASDs might not cause any problems and can sometimes close on their own but larger ASDs can lead to complications if left untreated. These include:

• Heart and lung damage: Increased blood flow to the lungs can cause damage over time.
• Heart failure: The heart may become overworked and weakened.
• Arrhythmias: Irregular heartbeats can develop.
• Stroke: Blood clots can form and travel to the brain.

“I was advised that if I didn't get the hole fixed my life span would be shortened,” said Blake. “My heart wasn't oxygenating blood correctly and it was causing my heart to stretch. I needed to have it patched.”

Blake had open heart surgery in 2014 to patch the large hole, and five months later he had a pacemaker put in.

Another Heart Surgery

While in the hospital with his son, Blake started to experience irregular heartbeats. He thought it was related to stress but a nurse on Paxton’s care team was concerned and convinced Blake to have it checked.

An examination revealed that the patch placed during his 2014 surgery, when he was 29 years old, had come off and needed to be replaced.

In February 2018, Blake underwent the same procedure once more, this time performed by Dr. Burkhart at OU Health—the same surgeon who had operated on Paxton.

As a congenital cardiac surgeon, Dr. Burkhart specializes in repairing atrial septal defects. He correctly sized the patch and sutured it to the appropriate surrounding tissue. In addition, Dr. Burkhart performed surgery to treat Blake’s arrhythmia at the same time.

“Blake has the most common type of atrial septal defect — a large hole in the wall between his two collecting chambers (right and left atrium),” said Dr. Burkhart. “The patch which was placed in his first surgery to close the hole had pulled away from the tissue it was sutured to. If we didn’t patch the hole Blake’s heart would continue to enlarge, causing worsening arrhythmia problems and ultimately, heart failure.”

The surgery brought significant improvement, and Blake finally felt well.

“The first time I had the surgery I was told I’d feel better after recovery, but I didn’t,” explained Blake. “This time around, at OU Health, I feel like I should have all along — I can take deep breaths, and I am well. I can’t believe I was breathing so badly for so long, without realizing it.”

New Life After Tragedy

Now 40, Blake is grateful to Dr. Burkhart and the cardiology team at OU Health, who cared for both him and Paxton. Although the loss of Paxton was devastating for the Mills, Blake and his wife had

a daughter six years ago who is perfectly healthy, completing their family.

“It chokes me up when I start talking about Dr. Burkhart,” shared Blake. “People talk about the heroes in their life and Dr. Burkhart is a huge hero in our lives and always will be. I don’t think Oklahomans understand just how important he is to this state. Why would you go anywhere else for cardiac care?”

Blake’s heart condition continues to be expertly managed by OU Health cardiologist Dr. Anjan Shah, M.D., associate professor at OU College of Medicine and head of pediatric electrophysiology and adult congenital heart disease service. Seven years after Dr. Burkhart put in a new patch, Blake is doing extremely well.

Expert Care for Congenital Heart Patients

OU Health is the state’s leader in congenital heart care, providing expert treatment from highly skilled cardiac surgeons and specialized cardiologists for patients from birth through adulthood. The program takes a comprehensive, multidisciplinary approach, involving various specialists to focus on early intervention and prevent health issues from worsening. With lifelong care, patients benefit from continuous monitoring and management of their congenital heart conditions.

“Currently there are more adults than children living with congenital heart disease in the United States,” said Dr. Burkhart. “It is important to have lifelong congenital cardiac care, managed by specialists who understand these unique needs. OU Health is the only comprehensive congenital cardiac center in the state where this level of care can be given.”

OU Health demonstrates a long-standing commitment to advancing care in the field of cardiology. Patients receive personalized, comprehensive care tailored to their unique needs, enhancing both the quality and length of their lives.

Learn more about pediatric and adult congenital heart care services at OU Health at (405) 271-4416.