Since the moment he was born on October 30, 2007 at Women & Infants Hospital, our son Ethan endured many illnesses and procedures that most adults do not encounter in a lifetime. He was our heroic little fighter who had an amazing determination and spirit from his very first breath to his last on January 25, 2011. Ethan passed away at the age of three.
Immediately after he was born, he was rushed to the NICU (Neonatal Intensive Care Unit) and remained there for 64 days. Within a few hours of his birth, we learned that he had a cleft palate and other birth defects, but that didn’t begin to prepare us for what was to come.
During this stay, he was transported to Children’s Hospital Boston to undergo a procedure on his heart. He was also struggling to breathe on his own and was intubated so that a machine could breathe for him. While he was having heart surgery, he also had his tongue tacked to his lower lip in hopes that it would clear his airway and he would be able to avoid a tracheostomy.
Little did we know at the time, that would prove unsuccessful and a tracheostomy would be his fate in April 2008.
On January 2, 2008 we took our little miracle home on oxygen and with an NG (nasogastric) tube in his nose for feedings. He would have periods of apnea and required an apnea monitor and a blood oxygen monitor. We were excited and nervous to finally get him home. We had a lot of training to learn all of this medical equipment, but we were so not prepared for the frightening turn things would take.
Four days after being home with Ethan, he was struggling to breathe, even with oxygen. We rushed him to Hasbro on January 6, for the first of what would be multiple times to the ER and the PICU (Pediatric Intensive Care Unit). We fell into a pattern of him coming home for a short while (5 days was the longest), to returning back to the ER for a few weeks or even month long stays. There were a few very close calls with him. He really always kept us on our toes. We never imagined what would happen next.
Throughout our admissions to Hasbro, we learned Ethan had a debilitating seizure disorder. He underwent powerful steroid treatment to try and stop the seizures, but it was to no avail. We even ordered a special drug from Canada (which is now FDA approved in the U.S.) that kept them at bay for some time. In August 2008, he underwent several procedures at Children’s Hospital Boston and was given a dose of a synthetic steroid which miraculously stopped his seizures. He never had another seizure after that one dose. This had truly dumbfounded his neurologist at Hasbro and at Children’s. Since this, I believe in miracles…they do happen!
After a few admissions to Hasbro for repsiratory distress, the attending PICU doctor insisted he receive a tracheostomy tube to help him breathe. We had way too many close calls and she was not going to let this happen again. This also meant he would receive a Gastrostomy Tube (G-tube) to eat.
Ethan was ventilator dependent and required 24-hour care. We cared for him at home for quite some time. Steve quit his job and became a stay at home dad to care for him full-time and manage all of his appointments. Even though Ethan had a ventilator, he still continued to have many battles with respiratory illnesses. He was also very susceptible to viruses and infections. He continued to spend most of his time at Hasbro. ER admissions to Hasbro became way too familiar and part of our regular routine. Ethan’s care and overall wellness came to a point where he needed full-time respiratory therapists and nursing care. One of Ethan’s specialists suggested we consider placing Ethan at a pediatric facility.
In January 2009, we placed him at Tavares Pediatric Center in Providence, RI. It was one of the hardest, yet, most selfless decisions we ever had to make for him. Tavares provided us with peace of mind that Ethan was well taken care of day after day. The nurses and staff loved and cared for him with no boundaries. They made sure he was always comfortable and had him participate in all kinds of activities. Above all, they provided us and our family with support and compassion, especially on days when we needed it most.