A Mother's Story I Goryeb Children's Hospital Pediatric Intensive Care Unit (PICU)
On September 10, 2019, the Foundation for Morristown Medical Center hosted a Ribbon Cutting and Tour of the Foley Pediatric Intensive Care Unit (PICU) and Outpatient Pediatric Services at Goryeb Children's Hospital. Laura Finelli, mother of a Goryeb Children's Hospital patient, was scheduled to join us in person to deliver her remarks — underscoring the importance of these vital services for pediatric patients and their families. However, Laura and her family were unable to join us as they were welcoming the arrival of their second daughter instead. We extend our warmest congratulations to the Finelli family.
When our first daughter Ava was born she was, all things considered, a rock star baby. Even as a newborn she didn’t cry loudly or keep us up all night; she was a great sleeper. Then we started to notice that she couldn't lift her head during tummy time. Unsupported, her head would sort of just flop down. She wasn't kicking her legs or swatting her arms around. Her pediatrician diagnosed her with hypotonia, which is low muscle tone. We enrolled her in physical therapy when she was about 4 months old. We worried that she was behind, but figured she would eventually hit the expected milestones. The doctor ordered more tests to find out what was causing the hypotonia, and they came back negative.
He sent us to a neuromuscular specialist here at Goryeb Children's Hospital who ordered another genetic test. Sure enough, Ava was diagnosed with Spinal Muscular Atrophy Type I or SMA, which is a genetic disorder that has inhibited Ava's muscles from developing properly since birth. SMA-1 is the most severe form of SMA. It robs people of the ability to walk, eat, and even breathe. The muscles around Ava’s lungs were so weak as a baby that she sometimes had difficulty exhaling, and because her cough is not strong enough for airway clearance, even a common cold could be life threatening. In November 2017, Ava caught a respiratory infection, causing her to suddenly have trouble breathing and keep her lungs open. We rushed her to Morristown Medical Center ER. When we arrived she was Code Blue. The team there saved her life.
We tend to use that phrase loosely “saved my life” or “what a life saver”, but in this case it is anything but loose. Between the ER doctors and the intensivists in the PICU they literally kept my 7-month-old breathing. They saved her life.
We spent several weeks in the PICU, several scary uncertain weeks. I’ve heard people say that doctors, even pediatric ones, don’t have good bedside manner, that they don’t interact well with patients or parents. There is no statement less true than that about the Goryeb intensivists. They are not only so gifted, they are also empathetic and understanding. They treat us as part of their team, always taking the time to explain Ava’s status and even if they have to repeat themselves or come back to the room to re-explain, they do it with patience.
We went home after about 4 weeks in the PICU. Ava was much better, breathing without a ventilator and ready to tackle SMA. Unfortunately, being as it was winter, after only two days home, she caught RSV, another respiratory virus. We called an ambulance when Ava was once again having trouble breathing, but because of our location we ended up at a different hospital than Goryeb. The ER staff at that hospital attempted to get us a transfer to Goryeb, but unfortunately the rooms were full. They only had 9 beds after all and couldn’t fit Ava. We stayed in the PICU at that hospital for about a week, each day attempting to get back to Goryeb where Ava’s specialists and the doctors who knew her and her needs personally were.
On Christmas Day, a bed finally did open up, and we were transferred back. Everyone here apologized that we had to spend Christmas in the hospital, but we considered it a Christmas miracle to be back in this PICU. We were finally back with the people who we trusted completely.
Ava has had several more stays in the PICU here since 2017. She’s beginning to recognize and remember the nurses and doctors. She’s seeing that while it’s scary and can be painful to be here, these are the people who are going to keep her well and help her get stronger. And while I would not wish that anyone be forced to spend weeks with their child in an ICU setting, if they’re going to have to be there, I hope it’s one where the doctors, nurses, and therapists make you feel comfortable. Where you are not just a numbered patient, but a real family.