Chandani Dezure, M.D., specializes in caring for hospitalized children and newborns in the neonatal intensive care unit at Lucile Packard Children’s Hospital Stanford, California. She lives in San Diego with her husband and two sons. Her story initially appeared in the June issue of Pathlight, the Pulmonary Hypertension Association’s quarterly member magazine. Join PHA to receive your Pathlight magazine.
By Chandani Dezure
It’s incredibly challenging to manage a medically complex child, moving to a new city with two young children, working as a frontline health care worker during COVID, and managing the responsibilities of a high-pressure job.
It’s given me a new perspective that truly focuses on the most important things in life and prioritizes our family time.
My son Ryan, 3, was diagnosed in July 2020 when he was 2. His medical team believes he has idiopathic pulmonary hypertension (PH), Group 1.
My son’s diagnosis has meant a lot more doctor’s appointments, hospital visits, procedures and imaging than we ever imagined. My husband and I work well together at coordinating and organizing these things as a team.
I’ve cut back on my work to spend more time to accommodate my son’s needs and prioritize time together as a family. Our family appreciates experiences over material things, and we will continue to celebrate our time together going forward.
Our employers have been tremendously supportive, and we’ve had to advocate for ourselves to ensure our work-life integration is in a healthy place. There is still so much love and laughter and happiness in our home. My son has shown me what an incredible resilient soul he is, though I wish he didn’t have to live in a world that needed him to be so brave.
I’ve always worked with children, including sick children in the ICU. I felt that I could understand families’ concerns and feelings, but until my son became a patient, I had never seen the medical system from the patient lens.
The system is broken beyond repair. As a parent of a sick kid, I have to constantly advocate for my family with physicians, nurses, insurance companies, surgeons, teachers, schools, therapists and pharmacies. And I am sometimes unsuccessful.
When I go to work as a physician, I’m consciously aware of the many challenges families face. I do my best to advocate for these families as a physician and a mom and to deliver family-centered care. I’m the best physician I can be because of having a child with PH.
While I wouldn’t wish a sick child upon anyone, being a patient or parent of a patient can be incredibly eye-opening to see the cracks in the medical system. Now, I’m better equipped to fill those cracks for my patients.
Like I mentioned, our family is full of love, laughter, happiness and hope. But it’s on a backdrop of a poor prognosis for a young child with an incurable disease. There are also pain, grief and tears in our family.
Caregiver fatigue is real and exhausting, so it’s important to find a support system for you and your family that works. Other people can try to help, but sometimes they just don’t get it. It’s not their fault.
Know that the Pulmonary Hypertension Association can be an invaluable resource for your family. Asking for help isn’t a sign of weakness.
It’s OK to ask for help. It’s also OK to not be OK.