My Daughter, My Hero: Living with Pulmonary Hypertension

By Christina Rodrigues, Bayer Consumer Health, Project Management, Aleve

“When you hear hoof beats, think horses, not zebras.” This is one of medicine’s most enduring aphorisms. “Zebra” is used to reference a rare disease or condition. This is my story.

Today is a typical day at the Rodrigues house. As I walk through the door from work, a remote control car runs into my foot. The TV volume is loud. The sounds of an iPad fill the background. I begin my evening routine of homework and baths, and preparing lunches for Olivia, Brody and Benjamin.

As they brush their teeth, I put on my headphones, turn on my music and begin my nightly ritual of dancing and singing while I do the dishes. Yes! I dance when I wash the dishes; only way to make this mundane task tolerable. Then before reading time with dad, the boys watch their favorite TV show quietly while we prepare Olivia’s life sustaining medicine.

Olivia’s journey began almost 12 years ago — I was 33 weeks pregnant with her when my water broke and she was eagerly wanting us to welcome her into the world a bit early. After she was born, my husband and I knew something was not right with our precious newborn, beginning with her feeding issues. My plan was to enjoy being a new mom for the next 18 weeks at home with Olivia. I never thought more than half that time would be spent in hospitals on what felt like an emotional roller coaster ride which would end with a diagnosis of pulmonary hypertension (PH). This would be the first of many “I never thought” moments.

Pulmonary hypertension (PH) is a rare complex and often misunderstood disease. The term PH means high blood pressure in the lungs. The blood vessels in the lungs become stiff, damaged, or narrow. The right side of the heart has to work harder to pump blood through the lungs. This potentially leads to heart failure.

After Olivia’s diagnosis, she was prescribed oral medications which were not strong enough for the severity of her pulmonary hypertension. Her team of doctors transitioned her to a powerful medication that was delivered from a pump attached to a catheter directly to her heart. This was an extremely challenging and very stressful time for our family. It led to many hospital visits due to infections and other complications. After nine catheter replacements, her medication is now delivered subcutaneously, or under the skin, thereby reducing our stress levels significantly.

We are blessed with having a large support system of family and friends. Along, with co-workers who have always supported me through Olivia’s journey. I am proud to work for Bayer, a company dedicated to advancing science for rare diseases.

Olivia is an inspiration to all who have the unique opportunity to know her. Despite her every day challenges, Olivia embraces each new day with her beautiful smile and positive attitude. She loves spending time with her two younger brothers who instinctively know when “sister” is having a challenging day. They love and support her. Olivia loves music, dancing and singing. She is excited for trips to the park for “buddy ball” and always pushing herself, never letting her disease hold her back. She looks forward to spending time telling stories, making s’mores and watching movies with family, neighbors and friends. She is a hero to all that know her. For all she endures, rarely complaining, she makes “challenging” look beautiful and strong look invincible. Olivia is my daughter, my strength and my super hero.

I am aware she is rare.