Stefano’s CDH Story

Born on June 4, 2022, via C-section, Stefano's entrance into this world presented unexpected challenges. His arrival was met with subdued cries, prompting immediate concern from the medical team. He was rushed to the NICU under suspicion of meconium aspiration. I, his mother, couldn't even cradle him in my arms for the first time. My recovery from the C-section was riddled with excruciating pain, hindering my ability to visit him.

Stefano's initial days in the NICU were a whirlwind of uncertainty. His feeding difficulties, his need for oxygen, and his erratic heart rate perplexed doctors, prompting a series of tests and X-rays. Three weeks passed with no concrete answers. The medical team faced uncertainty between diagnosing a potential diaphragm hernia or a diaphragm eventration, both unclear from Stefano's scans.

As Stefano displayed signs of improvement, no longer reliant on oxygen, the likelihood leaned towards an eventration. Due to this positive progress, they hesitated to proceed with surgery to rule out a hernia. They were cautious about opening him up, considering the higher likelihood of it being an eventration, despite the unresolved concern of the rapid heartbeat.

A diaphragm eventration was less worrisome as it was likely something he would naturally outgrow, whereas CDH invoked fear in me. Driven by instinctual fear and an urgent need for information, I plunged into researching CDH, plunging into a realm of medical intricacies that swiftly led to an anxiety episode. The complexities and uncertainties inundated me as I navigated information about an unfamiliar condition.

The doctors opted to monitor his progress at home, with regular check-ins, but after having him home for a week, Stefano's struggles to breathe during feeds sparked a heightened sense of alarm. Seeking further evaluation. We visited pulmonologist Dr. Galia Napchan-Pomerantz at Joe Dimaggio. She took one look at Stefano's diaphragm retractions and swiftly directed us to the Chief of Surgery, Dr. Holly Neville, who recognized the severity of Stefano's condition.

Upon observing him, Dr. Neville expressed immediate concern that the prior hospital didn't confirm the hernia diagnosis, emphasizing its life-threatening nature. She conveyed that had Stefano been born at her hospital, regardless of it being a suspected diaphragm eventration or hernia, they would have promptly opted for surgery to ensure absolute certainty.

Following another X-ray, Dr. Neville's expertise validated a suspected diaphragm hernia that had eluded detection in both the prenatal scans and the prior hospital examinations. Consequently, surgery was scheduled for the first week of July.

On the day of Stefano's surgery, I met with Dr. Neville, who detailed the procedure. To my surprise, she was accompanied by her co-surgeon, Dr. Carrie Laituri, whom I knew from working at her son's school. The familiar presence brought immense relief. Dr. Laituri assured me that she would personally care for Stefano, akin to that of her own child. They provided timely updates via text during Stefano's surgery, which concluded within four hours without the need for a patch; his hernia was successfully closed. His recovery progressed swiftly over the following three days, and we were eventually permitted to take him home. Witnessing his improved breathing with each passing day, I remain grateful to my instincts and the exceptional surgery team at Joe DiMaggio, whose expertise saved my precious baby's life.

Following the surgery, Stefano encountered delays in achieving several gross motor milestones. However, remarkable progress ensued with the invaluable support of his dedicated physical therapist, Courtney Grebow, who invested substantial time and patience in Stefano's recovery, particularly focusing on strengthening his core.

Now, at 18 months, Stefano has made significant strides, aligning closely with most developmental milestones and thriving. He maintains annual check-ups with Dr. Neville and biannual appointments with his pulmonologist. Apart from these routine visits, he exudes happiness and zest, embodying a spirited and cherished little miracle in our lives.

Though our CDH journey, by some standards, may seem less severe, it was emotionally taxing. Yet, within our shared CDH community, I find solace and strength. My heart beats with yours, and I send prayers for healing to every CDH family.

With gratitude and hope,

Kerstin and Jonathan Perry

Stefano's Proud Parents