Nico's story: A mother's quick action led to lifesaving care

As a young, soon-to-be mom, Joanna wanted to do everything she could to prepare to be a parent. When she couldn't sleep during her first pregnancy, she spent countless hours reading up on the latest parenting articles and best practices — including the importance of learning CPR.

Thirteen years later, her CPR training saved her youngest child's life.

It started as a normal Saturday. Joanna was cleaning her room with 4-month-old Nico in his bouncer. He let out a cry that seemed to get stuck in his throat. Then his skin started turning blue.

Joanna rushed into the kitchen to perform CPR on a hard surface, just like she’d learned in her CPR training. She yelled for her older sons to call 9-1-1.

"I was trying to remember every step of CPR and it was this mental battle because you’re seeing your baby die in your arms in front of you but you have to remember the steps, you can't let your mind freak out,” Joanna says. "Thankfully my kids reacted fast, dialed 9-1-1 and put the call on speaker."

The responder stayed on the line with Joanna, counting out compressions. The compressions worked — Nico was breathing by the time the ambulance arrived.

Rushes of panic, moments of relief

The first responders checked Nico’s vitals. His heart rate was a little fast, but nothing too far out of the ordinary.

"I was telling them I just had to do CPR. But by that point Nico looked perfectly fine," Joanna says. "They suggested we go to the hospital but said we didn't need to rush there. Then, as we were getting into the ambulance, it happened again."

Nico stopped breathing and was turning purple. This time, the first responders did CPR and Nico was breathing again by the time they got to Children's Health℠. As a nurse was checking his vital signs in the emergency department, Nico stopped breathing a third time.

Soon, a whole care team was gathered around Nico, restoring his breathing and connecting him to heart monitors. Thinking back to that night, Joanna remembers rushes of panic and moments of relief.

An extremely rare genetic disorder

Nico's care team ran test after test to find the root of his symptoms. Jordan Ezekian, M.D., a Pediatric Cardiologist and Inherited Arrhythmia Specialist at Children's Health and Assistant Professor at UT Southwestern, took the lead on his care.

A heart rhythm test followed by genetic testing revealed that Nico had Brugada syndrome, which happens because of a problem with one of the sodium channels in the heart. Brugada syndrome is rare in general and extremely rare in infants. It can lead to fainting, difficulty breathing and cardiac arrest (when the heart suddenly stops beating). That’s what was happening to Nico.

The typical treatment for people with Brugada syndrome who experience cardiac arrests is a device called an implantable cardioverter-defibrillator (ICD). It helps monitor and regulate heart rhythm. If needed, it can also administer a shock to reset the heart to a normal rhythm (a process called defibrillation).

However, these devices aren't generally recommended for infants or young children because they may experience more complications, and the device may not be the right size for their body. So the care team turned to medications to maintain his heart rhythm and sent Joanna home with an automated external defibrillator (AED), just in case.

The medications seemed promising until Nico had another episode at home, a few weeks after leaving the hospital. Again, Joanna saved his life with prompt CPR. She also had to shock him with the AED twice before the ambulance arrived.

This time, the first responders needed to connect him to a breathing tube. Fearing Nico might not make the 30-minute drive to Children’s Health, they rushed him to their local hospital in Mesquite, Texas.

"The Children's Health transport team met us there and they did an incredible job of communicating with the team at our local hospital to keep him as safe as possible until we could get him to Children’s Health," Joanna says.

A panel of experts from Children’s Health and around the world

Realizing that medications were not working to control Nico's abnormal heart rhythms, Dr. Ezekian consulted a group of international pediatric Brugada syndrome experts. She also formed a panel of Children's Health experts from cardiac intensive care, electrophysiology and cardiac surgery to create the best possible care plan for Nico.

Together, they determined that implanting the ICD would be the best option. Then, they worked together to decide on the best surgical approach to implant the ICD as safely as possible.

"Dr. Ryan Davies, Nico's surgeon, did an amazing job and Nico recovered quickly," Joanna says.

Listening to a mother’s intuition

These days, Nico is back home and doing well. He'll continue to see Dr. Ezekian and receive ongoing monitoring at the Children's Health Inherited Arrhythmia Clinic as he grows up.

"Nico's cardiology team recommended we see a neurologist because cardiac arrests can lead to brain damage. The neurologist was completely shocked that Nico’s MRI was so clean, with just one tiny spot. They told me that prompt CPR was probably what saved my baby," Joanna says.

Now, she encourages all families to stay current with CPR training and shares a few other words of wisdom.

"If you feel a mother’s intuition, listen to it," she says. "Educate yourself and your family and have a plan for the worst-case scenario. Make sure you're up to date on CPR and especially on doing CPR on a baby. Do everything you can. And then get your child to doctors who you trust and who will do everything they can to help your child."

Learn more

From the most common to the rarest, Children’s Health provides expert care for a wide range of heart conditions and is ranked as one of the best cardiology programs in the country. Learn more about The Heart Center.