Both of our children (Brendan, age 6 and Carter, age 2) have been patients at Boston Children’s Hospital since they were 6 months old. Here are their stories:
At 6 months old, Brendan refused to eat or drink – he consumed 8 ounces of fluid a day, or the amount a typical 6 month old would consume by 9 in the morning. After various trips to the emergency room and countless overnight stays, Brendan was admitted to Boston Children’s where he stayed for 28 days. He was diagnosed with FPIES, a severe, and extremely uncommon (0.28% of the population), allergic reaction to a protein in cow’s milk. This started Brendan’s unique relationship with food – he has since been diagnosed with an eating disorder called ARFID and is followed by a team of doctors in the Growth and Nutrition clinic at Boston Children’s Hospital.
Not to be outdone by his older brother, Carter has had three surgeries at Boston Children’s Hospital, two during this pandemic, all of which were related to his airway (not ideal with Covid!). At age 1, Carter was diagnosed with a Laryngeal Cleft, an abnormal opening between the larynx and esophagus, which causes eating and breathing issues. This was repaired in September - liquids can now follow the correct path rather than sneaking into his lungs. His tonsils/adenoids surgery in April resulted in an unexpected two day stay in the ICU, followed by another two inpatient days.
We don’t share these stories for pity. We share them as a backdrop to the incredible, compassionate care we've had and continue to receive at this amazing hospital. The doctors were able to identify an allergy that happens in only 0.28% of the population; the nurses cared for both of our children as if they were their own; the support staff worked with our insurance providers, set up all future appointments, and worked with us to make sure we could navigate Brendan’s feeding tube with our eyes closed and hands tied behind our back (thankfully the feeding tube days are WELL behind us!). Most of all, everyone was kind, compassionate and loving. We went through two surgeries during a pandemic - we cannot express enough gratitude for the staff’s commitment to positivity, not only providing the same warmth and kindness as they always had but creating a safe space where we could focus on Carter and nothing else.
You may hear all the stories about why Children's Hospital is such a special place and we're here to confirm that everything you hear is true, and more. We walk for Brendan. We walk for Carter. We walk for all the amazing Doctors and Nurses at Children's. But we truly walk to ensure that other children continue to be afforded the same level and quality of care that our children have been given. We thank you for reading our story so you understand the value that Boston Children's Hospital provides. If you would like to donate, our family, and countless others, will be forever grateful.