Megan Strothmann knew her pregnancy was different, but she never imagined her son would be diagnosed with a rare heart condition before he was born.
Megan was diagnosed with gestational diabetes, which led her to see a specialist and have more ultrasounds than normal. At a growth scan last July, doctors noticed the baby’s heart rate was extremely low.
“The fetal medicine doctor basically said, ‘Do not go home. I want you to go straight to the Colorado Children’s Hospital,’” said Meghan.
On her way, she called her husband, Derek, and told him to meet her there with their kids. Once there, a cardiologist at the Colorado Fetal Care Center at Children’s Hospital confirmed the baby, who is now named Grayson, had heart block.
“Heart block is an interruption in the flow of electricity through the heart,” said Dr. Dustin Nash, a cardiologist. “The upper chamber of the heart is usually in charge of how fast the heart beats. It looks like there was a blockage of that signal.”
In his case, his heart rate was 50-60 beats per minute, said Nash, which is much lower than the average 100-180 beats per minute for a fetus at that stage. His heart wasn’t beating frequently enough to get enough blood to all his organs.
At Children’s Hospital Colorado, Nash said they only see about five to 10 children have heart block each year. And, that includes cases not only in Colorado, but also from nearby states – Montana, Wyoming, parts of Nebraska and New Mexico.
A common reason for heart block is that antibodies in the mother’s blood attacks the fetus’ conduction system. Or it can be due to an autoimmune reaction between the mother and the fetus’ developing heart.
However, Grayson’s was more uncommon. He had a rare genetic change that resulted in the condition.
“Grayson’s heart block in many ways is acting sort of like an iPhone cable that only charges when you hold it at a certain angle,” said Nash.
Megan was immediately admitted to the Colorado Fetal Care Center and was scheduled to have a C-section on July 19, two months before Grayson’s due date.
As an electrophysiologist explained to the family that Grayson would need a pacemaker after he was born. Along the way, the family felt confusion and fear, but they regained some confidence after meeting a multidisciplinary team at the hospital.
“They were hopeful, but also preparing us for the worst because we didn’t know what he was going to be like,” said Megan.
The medication given to Grayson through the uterus brought his heart rate up, allowing the C-section to be canceled.
A few days later, Derek was taking the kids home after celebrating their eldest daughter’s birthday when Megan’s lab work showed she was developing preeclampsia and the baby needed to be taken out.
“They wanted to do this before the preeclampsia got any worse,” said Megan. “Because that would have caused me to go to the adult campus next door and then all of the team members for him would not have been there.”
Just as physicians were called, so was Derek. As the Strothmanns entered the operating room, they were greeted by the multidisciplinary team of 30 specialists.
“My initial thought in that moment was, ‘They’ve thought of everything,’” said Megan. “There’s no way that my baby can’t make it.”
Grayson was given two doses of heart medication to increase his heart rate and allow doctors to avoid a procedure that would have meant placing a pacemaker in the baby before the birth.
As the doctor delivered the 4.5-pound baby, a small cry was heard, providing relief to the Strothmanns. However, a moment later, Derek said Grayson wasn’t breathing and for more than a minute, the team administered life-saving CPR.
“I don’t know who had to do that to a little five pound baby, but somebody did and I will forever be thankful for them for saving his life,” said Megan.
Grayson’s lungs were too weak to put in the pacemaker that night. Yet in the days after his birth, Grayson’s heart was beating around 154 beats per minute. No one could answer why.
As Grayson turned five days old, his heart rate began to decrease. So, he underwent a pacemaker surgery.
“That was genuinely the longest three hours of both my husband’s and I’s life,” said Megan.
While most pacemakers are made for adults, Nash helped coordinate the use of a specific pacemaker for small infants, the Pediatric IPG. If at any time the conduction in the heart isn’t happening, the pacemaker kicks in.
After the procedure, the Strothmanns saw a glimmer of hope as they got to hold their son for the first time since he’d been born.
“He was just like a little superhero to us,” said Megan.
After multiple blood transfusions, a few setbacks and 38 days in the hospital, the Strothmanns took Grayson home. Approaching his first birthday, he “is eating like a champ” and has become a people person.
“He is a happy boy,” said Megan. “He is so fun and his brother and sister just adore him.”