A family’s heart: Maryland couple’s journey to hope and health for young son leads to Hopkins in Baltimore

It’s a rainy day in early spring when Aidan Marcus, a raven-haired toddler with plump rosy cheeks and a wide smile, arrives at his grandparent’s house in Clarksville for a family visit.

After rounds of hugs, cuddles and kisses, the almost 20-month-old Aidan, and his big brother, Michael, (who proudly holds up four small fingers to show his age) begin to busily explore their surroundings. Buzzing from one activity to the next, they happily race toy cars, play games and read children’s picture books.

“What sound does the sheep make?,” Ambar Marcus, 33, asks her youngest son as he climbs into her lap for impromptu story time. “Baaa-aa,” he replies.

In many ways, Aidan is like any other toddler who’s growing, developing and meeting childhood benchmarks. He’s walking, talking with a mix of gibberish and simple words, and can hold his own sippy cup. To simply look at him you might not know that Aidan has already weathered serious health challenges — leaving literal scars for him and emotional scars for his parents.

‘It was very shocking’

At 22 weeks pregnant, Ambar had a prenatal screening that raised alarms. Scans later revealed that the unborn baby’s heart wasn’t developing properly.

“It was very shocking, because it had been an easy pregnancy,” recalls Ambar, a graphic designer. “I felt like I’d emotionally blacked out. It was a lot.”

Justin Marcus, a 35-year-old business owner, was working when his wife called with the news. “We were very scared and anxious.”

Ambar, a native of Venezuela who grew up in Howard County, as did her husband, had long dreamed of having a family.

“Love is at the center of our home, and we both love kids,” Justin said.

Now life was throwing them a curveball. Doctors said their unborn baby had a congenital heart defect in which the left side of the heart is underdeveloped.

Aidan’s heart, which should have sat just slightly left of the center of his chest, was actually slightly to the right. Additionally, the valve that controls blood flow from his heart to his lungs did not form.

Tests further revealed that the baby’s internal organs were flipped, developing on the opposite side of the body from where they are normally situated.

“There were a lot of emotional ups and downs,” said Justin.

The Marcus family was referred to the Johns Hopkins Children’s Center in East Baltimore, where they were able to get help and learn about next steps.

A pandemic birth

“Even before he was born, we knew Aidan would require surgery,” said Dr. Bret Mettler, the director of pediatric cardiac surgery at Hopkins, and co-director of the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center. “But we needed to wait,” he said, until after the baby was born.

“Oftentimes with complex congenital heart disease,” Dr. Mettler explained, “we diagnose the specific abnormality in the womb, but surgical intervention is tailored to both the anatomy and the physiology after birth.”

After months of monitoring, Aidan was born weighing 7 pounds, 7 ounces in August 2021 — right in the midst of the coronavirus pandemic.

The delivery went well, but a few hours later, the newborn began having difficulty breathing and required oxygen.

Just a week after his birth, Aidan underwent a catheterization procedure to keep open a blood vessel found in babies that typically closes just after birth. This allowed his heart to provide extra blood flow to his lungs.

“A month after Aidan was born, we were able to take him home,” said Ambar.

While the homecoming was joyous, it was also a very fraught time for the Marcus family. Doctors had already told his parents that Aidan would require open heart surgery once he grew and put on more weight. Upon release from the hospital, Aidan still required oxygen therapy. His parents were nervous about COVID-19, and potential exposure to the baby.

“Aidan was recovering, and we were very protective,” said Ambar. “For the first few months, we avoided seeing anyone.”

“We did not venture out to social events much,” adds Justin. “We would have only a [few] family members over and everyone wore masks.”

They did attend Aidan’s follow up appointments and it was at one of those that the family received another diagnosis that threw them for another loop. Besides his heart condition, doctors discovered via genetic testing that Aidan also had a lung disease known as primary ciliary dyskinesia, called PCD for short.

“His cilia, tiny hairlike structures that move fluids and particles in parts of the body, including the mucus in the airways, do not move properly,” said Dr. Shruti Paranjape, a pediatric pulmonologist at the Johns Hopkins Children’s Center, and one of Aidan’s doctors. “That makes it harder to move mucus out of the airways and easier for bacteria and viruses to cause respiratory infections.”

‘The scariest time’

As time progressed, Aidan’s condition worsened. In December 2021, his parents were advised by doctors at Hopkins that Aidan wasn’t getting enough blood flow to his lungs. The baby was essentially breathing out of only lung. To help his lungs better function, the medical team recommended that Aidan’s open-heart surgery take place as soon as possible.

“That was the scariest time for us,” Ambar said, recalling that doctors told the parents their son would need surgery within the next 24-48 hours.

“We had so many thoughts of losing him,” said his father.

That next day, just a week before his first Christmas — when Aidan was almost 4 months old — he underwent the open-heart procedure at Hopkins. Mettler performed the delicate surgery on Aidan’s heart, which was about the size of a golf ball at the time.

More than 100 doctors, nurses, and other team members at Hopkins were involved in the baby’s care, from surgery to recovery.

The operation, which Mettler said “made breathing much easier for him,” was successful, and Aidan was able to leave the hospital two weeks later. Physical and occupational therapy helped him gain strength and continue his development. Eventually, he no longer needed oxygen support.

More than a year later, Aidan’s tiny chest bears a scar but his doctors say his heart is doing well, although he will require more surgery in the future.

When he is about 3 years old, Aidan will need another open-heart procedure, Mettler said. That’s typical for children with his condition to maintain proper blood flow to the lungs as the organs grow.

“Many children like Aidan have healthy lives,” with preventative care and treatment, he said.

‘We are blessed’

Aidan has already proven how resilient he is, something that gives his parents hope for his future. They hope to inspire and encourage other families.

“He’s overcome obstacles and is such a trooper at such a young age,” said Ambar.

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“He’s a champion,” his father adds. “There have been so many miracles.”

The couple said they are fortunate to have the expert care at Hopkins, as well as from Aidan’s other doctors, and also health insurance which helps defray their whopping medical bills.

That’s even more important now that Aidan’s older brother Michael has been recently diagnosed with hearing loss. He is learning American Sign Language, and Aidan is learning it, too.

“We’re really focusing on good things for our family. Everything that’s happened has been very challenging and hard on us individually and as a family,” said Ambar. “But Aidan is a happy baby. Michael is a doer. We have a great support system with grandparents on both sides, family and caring friends. "

The couple say the experience has made them more conscious of what is truly important in life, and strengthened their faith.

“As believers, prayer is part of our daily practice. We are constantly relying on God, and our faith,” said Ambar.

Justin agreed. “So much has happened. … but we are blessed.”