Meet Clare


CDH Superhero Clare
Congenital Diaphragmatic Hernia
New Clare 1 SQ SMALL.jpg

CLARE’S STORY

For Joe and Kate Stacom, the thing that thrived out of the hardship of their daughter Clare’s CDH diagnosis was faith. Faith in the powers-that-be. Faith in the spitfire spirit of Clare. And faith in the passion and dedication of the medical providers at Brigham Women’s Hospital and the Children’s Hospital who were so invested in Clare’s success. 

Many CDH diagnoses come at the customary 20-week anatomy scan. Clare’s didn’t come until a second ultrasound at 36 weeks. “If I hadn’t developed hypoglycemia during pregnancy, and been so conservative in monitoring it, we might have missed it,” her mom, Kate, reflects. The fact that it wasn’t noticed until later on was a fortunate development, she noted. “It was a good sign,” she said, “it meant that the hernia was smaller.” As soon as the diagnosis was made, Clare’s team swept into action to formulate a plan. One nurse especially, Donna Morash from the hospital’s CDH clinic, called Kate and Joe right away and helped take notes on their behalf throughout their team meeting, so they could listen intently to the plan developed by Kate’s doctors and Clare’s incredible surgeon, fierce advocate, and now long-term friend, Dr. Terry Buchmiller. Together, they decided to induce at 39 weeks. Luckily, since Brigham partners with Boston Children’s Hospital, there was no change of doctors necessary. 

Just three weeks later, baby Clare made her debut in the world with a whole team of people eagerly awaiting her arrival. Nearly 30 people were in the OR when the little firecracker finally arrived. While Kate recovered, Clare and Joe were swept through the tunnel connecting Brigham to Boston Children’s. It was then that Clare started to show the world what she was made of. Even with a fragile lung and Pulmonary hypertension, Clare’s determination, positive energy, and grit were palpable. Nurses Karen, Des, and Helen from 7 South, as well as Nurse Annie Kuphal from 10 East, became like family to the Stacom’s during this time. Meanwhile, their Social Worker, Annie Clock, helped connect the Stacom’s to CDH community resources that could help them navigate their journey. Eventually, under the expert care of her team at Children’s, Clare’s intubation was removed, her hypertension and lung issues resolved naturally, and she was able to be discharged. After that, her family’s main focus was working to develop a fortified diet with Registered Dietician Molly Studley to meet Clare’s caloric needs so she could continue to thrive.

Today, Clare at any given moment can be found running around outside and putting all of her energy to good use. She has blossomed over the past two years into a radiant little girl, glowing under the loving care of her two parents. She’s diligently preparing for the next challenge life is throwing her way: becoming a big sister, eagerly awaiting the arrival of her baby brother. Clare and her family are excited to welcome another new life into the world. Their journey with CDH has fortified their patience, trust, and gratitude for each and every day they have together, and they’re thrilled to share that joy as a growing family and with the CDH community.

As told to Fore Hadley by Kate Stacom aka “Mom”


About the Fore Hadley Angels in the NICU Fund

Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Clare’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.