What I remember most about Richie’s birth was the silence after he was removed from the womb.
We held our breath waiting to hear his first cries, and the silence felt eternal. The NICU team whisked him into the adjoining room, and we finally heard a tiny wail. The NICU team was busy managing what we later learned was respiratory distress. Richie’s birth and the following stay in the ProMedica Toledo Children’s Hospital Newborn ICU were filled with tests and specialist visits, and I was filled with emotion.
The joy of being a first-time mother was often drowned in fear, anger and guilt. I felt guilty because my son was born with this disease that, while yet undiagnosed, appeared eerily similar to my sister’s muscle condition. Shortly after her birth, my youngest sister had been diagnosed with muscular dystrophy. I had done my due diligence and participated in genetic tests and genetic counseling, all of which revealed that I was very unlikely to pass this disease to my offspring, but I still felt as if my child’s illness was my fault because I had passed along a bum set of genes.
I felt angry and envious of the moms, some young and foolish, who had healthy children that they didn’t even want, while my husband and I had planned and even gone through fertility treatments to have Richie.
Most of all though, I felt fear. This child whom I had loved, read to and sung to since I was just weeks into my pregnancy was so tiny and frail that I feared he would never get to see the room we had prepared for him. I feared that his little body was not strong enough to fight. I feared that the future I had envisioned for him was simply impossible. I feared that I didn’t even know all the things I needed to fear.
Richie, the biggest kid in NICU at the time, was very floppy and weak, but he surprised us with his determination. Intubated at birth, he was quickly able to be placed on CPAP and then on oxygen without pressure. He stayed in the NICU unit for 31 days and we were excited and nervous to take him home. Just weeks after we brought Richie home with an apnea monitor, an NG feeding tube and oxygen, he began to have difficulty breathing. We brought our tiny boy, still less than 8 lbs., to the ER at Toledo Hospital, where he was admitted to the Pediatric ICU for respiratory failure.
Several days and lung collapses later, we learned that he would require a tracheostomy, along with a previously planned muscle biopsy and G-tube surgery. It’s hard to describe the blinding fear I felt then, unsure of my ability to care for a kid with a trach. This was some heavy-duty medical stuff, and those days were a cloud of confusion and emotion.
From the fog emerged an answer: the results of his muscle biopsy revealed a diagnosis of fiber-type disproportion myopathy. This diagnosis meant a lifetime of disability including muscle weakness, respiratory problems, feeding difficulties and orthopedic complications, but having seen my sister defeat stereotypes and defy predictions, I knew Richie could do the same.
Richie spent two months in the Pediatric ICU, a place that still feels like a second home to me. I slept in a chair in his room every night and skipped meals and bathroom breaks to hold him for hours on end. The nurses made sure that Richie was cared for and that I took care of myself. They celebrated his achievements and cheered him on as he made progress. His nurse, Hayley, was in tears right alongside me when Richie reached up from his crib to swipe a wind chime I had placed in his crib. The nurses and therapists helped us to learn everything we could about his care, and we prepared our home for the equipment that he would require. Just before his first Christmas, Richie came home again, this time with a trach, a ventilator, a g-tube, a feeding pump, a cast for his spine, and a pulse oximeter.
Richie is three years old now. His life includes lots of services, specialists and therapists: orthopedic, pulmonology, ENT, gastroenterology, neurology, urology, cardiology, physical therapy, occupational therapy, speech therapy, and Early Intervention/Help Me Grow. It takes lots of organization to manage our schedules, but we make it work. His trach and g-tube are just normal aspects of his care like bathing and brushing his teeth. Now, he only uses his ventilator for a few hours a day. His visits to various specialists are fewer and farther between. He will even go to preschool this fall. There is truly a village involved in his care and development, and together, we are amazing.
Richie’s needs don’t stop him from being a kid. He laughs hysterically at Peppa Pig, he knows his ABCs and numbers, and he likes to throw things under the couch so he can chuckle when I crawl to fish them out. He has a motorized wheelchair that he loves to drive, especially to crash into our furniture. He’s bright, precocious and determined, all qualities that we adore.
There are lots of milestones ahead that make me nervous and a little afraid, but overall, I am hopeful. We set high expectations for Richie: he is expected to earn at least one doctorate and contribute to the world thoughtfully and compassionately. Our job is to prepare him to do these things.
When a child is born, people do the requisite count of fingers and toes, and they look at the child and say he or she is perfect. When a child is born with a disability, that child requires us to redefine perfection. Richie’s muscles don’t do what other people’s muscles do, but he is indeed perfect. He requires more in terms of care, organization and planning. However, all of that comes with great rewards. Every milestone is cherished, and every new skill acquired is a gift. We continue to be amazed at Richie’s progress, and we can’t wait to see how high he will fly.
Nikki (Charisse) Montgomery has served on the ProMedica Toledo Children’s Hospital Family Advisory Council since 2013. In addition to being a professional writer and editor, she is pursuing a graduate certificate in patient advocacy. She is a hospital volunteer and a parent mentor, and she volunteers with Muscular Dystrophy Association. Nikki and Richie are subjects in ProMedica Toledo Children’s Hospital’s Beyond the Frame photo exhibit, on permanent display inside the hospital’s main entrance hallway. To connect with Nikki and Richie, as well as other families participating in the Beyond the Frame project, please use #BeyondTheFrame to connect and share your inspiring words.