“Your son is what we categorize as failure to thrive,” the doctor told us.
My husband, Alex, and I looked at each other across the emergency room. For the second time in as many days, I held my week-old newborn son, Joseph, in my arms – 6 pounds a week after being born yet feeding constantly. The doctor in the room told us we were going to be admitted for further testing. The next week proceeded in a blur, newly postpartum and not knowing what I was doing but knowing that something about this was all wrong. I was supposed to have joined this exclusive club of motherhood. New moms are supposed to be concerned with latching and sleep deprivation, not calculating every single 1/10 of an ounce their baby ate and weighing every single diaper. Sometimes I had to physically restrain him for blood draws out of his head and foot because his veins were too small, while he wailed in confusion in a shared hospital room in downtown Boston. Something was wrong, but as a newly minted mother, I had no idea what it was.
We were released a couple days later with a diagnosis that my breast milk just wasn’t fatty enough for him, and we would have to supplement. I happily accepted this strange, unnerving failure-to-thrive diagnosis being 100% my fault. Hindsight being 20/20, I can confidently say that I was in a blissfully ignorant state of denial. Four months prior we had gotten a phone call telling us we were both carriers of the cystic fibrosis gene. It had devastated months of what had been an absolute miracle of a pregnancy. I couldn’t eat. I couldn’t sleep. Sometimes I wonder if I knew then what I know now – that I had somehow intuited that this baby was going to have cystic fibrosis. But when we had our beautiful baby boy, his newborn screen came back negative for CF.
When Joseph was 3 weeks old, we were admitted to Boston Children’s Hospital for a second time. He had lost all the weight he had gained and was at risk for falling under 6 pounds. Rounds of doctors came in and told us what tests they were running for that day, while we sat back dazed and confused and accepted everything without question. Finally, Alex and I had a hushed conversation while Joseph napped, machines beeping all around us.
At that point we said out loud what we knew in our hearts – our son had cystic fibrosis.
I almost felt sorry for the unsuspecting doctor who walked into that room. She got an earful – we were stopping all other testing immediately. We wanted his DNA sent for testing, and we wanted to speak to someone at the CF clinic. This moment was pivotal in taking back some of our power as parents – for advocating for what our son needed. Within a few hours, Dr. Chiel from pulmonary was in our room. She was a young doctor who spoke with compassion and understanding and made us feel like we were joining a new team – one where my son was the star, and we would all play our supporting roles.
She explained that she would be starting Joseph on pancreatic enzymes and would be moving us to a private room until the final DNA results for him came in. This was the first time that a doctor heard what we were saying and acted upon it. Once Joseph began this new treatment plan, things began to turn around. He was gaining weight, he was no longer constantly hungry, and his skin had that pink newborn hue that we didn’t realize was missing. Almost as important, a trust began to form between our family and the pulmonary team with Dr. Laura Chiel at the helm.
The relationship between caregivers and medical teams is complex. At times there are competing goals and differences of opinion about what’s right. I truly believe that it was because we had advocated for Joseph early on that we started our relationship with our care team with an unspoken understanding: Dr. Chiel understood cystic fibrosis better than we ever could, and even at only a month-and-a-half-old she knew that we were always going to understand our son better than she ever could. This mutual respect and understanding have made the last two years a partnership versus a doctor-patient relationship. We knew we needed a care team that saw our family as a whole, instead of our son as just another diagnosis and treatment plan. We have learned to navigate sensitive conversations with honesty, not be afraid to ask questions or push back, and have received the same in return. I do not want to portray that navigating how and when to advocate for my son has been easy or something that I get right every time; the truth is that it is something I am figuring out every single day.
Interested in sharing your story? The CF Community Blog wants to hear from you.