Our family’s journey of the heart

Nicolas and twin sister EmmyWhen our son Nicholas was 5 weeks old, we brought him and his twin sister Emmy to our pediatrician for what we thought was a routine well visit. Though the twins had been born four weeks early, Nicholas had only been in the neonatal intensive care unit (NICU) for a few days with low blood sugar and jaundice. Both babies seemed healthy and we had no major concerns.

However, as we watched our pediatrician listen to Nicholas’ heart and pulse, we realized something wasn’t right. He told us the pulse in Nicholas’ lower extremities was weaker than the pulse in his upper body. He suspected Nicholas might have coarctation of the aorta and referred us to our local heart center, where they confirmed the diagnosis and immediately scheduled us for surgery at Boston Children’s Hospital.

We were in shock as we coordinated care for our daughter while packing for Nicholas. He had only been home for a few weeks and now he was going back to the hospital, this time for surgery.

As we were going through the motions of echocardiograms and x-rays, we were feeling incredibly scared and hopeless. It was as though our hearts needed repairing too — they were broken for our son and what he had to bravely face, and as parents there was nothing we could do about it.

Nicolas and his dad
Nicolas and his dad Rob, after surgery

When we met with his cardiac surgeon at Boston Children’s, Dr. Christopher Baird, I remember holding his hands thinking, “these are the hands that will heal my son.” My husband Robert asked Dr. Baird if he had gotten a good night’s sleep — a moment of levity we desperately needed.

Before going home, a neurodevelopmental evaluation

The surgery was a success and we were home within days. Before being discharged, Nicholas was evaluated by Dr. Samantha Butler of the Cardiac Neurodevelopmental Program (CNP) to identify all Nicholas’ strengths and sensitivities. We were strongly encouraged to follow up with Early Intervention (EI) for developmental delays, given his cardiac history.

Once we got Nicholas settled in at home, we followed this advice and arranged EI services. Initially, physical therapy was arranged to help Nicholas reach his gross motor milestones. As he got older, it became clear he was struggling with language and fine motor skills, so we worked with EI to add speech and occupational therapy.

We were also followed by Dr. Caitlin Rollins, pediatric neurologist in CNP, who helped us advocate for increased EI and therapy along with helping with other medical services after discharge home.

A diagnosis of autism spectrum disorder

Nicholas made good progress in some areas, but shortly after his second birthday we realized he continued to struggle with language and social engagement, as well as repetitive behaviors. We returned to the Cardiac Neurodevelopmental Program for a visit with Dr. Anjali Sadhwani. After a comprehensive evaluation, Dr. Sadhwani diagnosed Nicholas with autism spectrum disorder.

Although we had suspected autism, it was a hard diagnosis to hear. But Dr. Sadhwani made the moment less painful and more empowering by giving us hope, encouragement and the resources we needed to move forward. We really appreciated how she worked with our son during these assessments with a respectful and playful approach. Unlike most clinical exams, it was an opportunity for Nicholas to have fun.

A happy and talkative 5-year-old

Nicholas is now a happy and active 5-year-old. He loves cars and even has his own subscriptions to Car and Driver and Motor Trend and can be seen at most local car shows. He takes swimming lessons and just started baseball.

Although we were once worried Nicholas might not develop much language, he’s now very verbal, and we sometimes say he never stops talking (if he can get a word in edgewise with his twin sister). Nicholas and Emmy are best friends and have a unique bond that we are grateful for.

Nicolas swims at the beach

Through the years, Dr. Sadhwani has continued to follow Nicholas, offering us support by advocating for intensive services and contributing to special education meetings. She’s seen Nicholas through many transitions, from early intervention to integrated preschool, and now his upcoming move to kindergarten this fall. There’s always one doctor you’ll remember forever and will have a special place in your heart. She doesn’t know it, but Dr. Sadhwani is that doctor for us.

Finding gratitude and compassion

We’re very proud of the progress Nicholas has made and we’re grateful to all of the clinicians who encouraged the early intervention that has allowed us to be proactive in his care. Yes, it can be challenging, but we are no longer hopeless; we are confident and resilient.

Nicholas’ journey started with the physical health of his heart and led our family to our heart’s purpose — finding compassion and gratitude.

Learn more about the Cardiac Neurodevelopment Program.