The Fight Worth Fighting

I recently heard a quote that expresses my feelings of 27 years ago, “Numb from my child’s unexpected diagnosis my small voice whispered what are we going to do, and the Mama Bear in me said whatever it takes. And that is why you never mess with a heart mom”.

At the age of 17, I not only became a new mom, but a heart mom. My daughter, Cassandra was born at 12:45 am on October 9, 1992. Cassie was born blue and whisked away to have her lungs suctioned. After  90 minutes, I still hadn’t seen her and asked the nurse where she was. The nurse informed me that the doctor in the Neonatal Intensive Care Unit (NICU) needed to speak with me.  I entered the NICU to see Cassie in only her diaper with multiple wires and an oxygen mask. It was a disturbing and frightening site for me. The doctor explained to me that Cassie had a congenital heart defect (CHD) called Transposition of the Greater Arteries (TGA), and that she was going to require a procedure that day as well as open heart surgery within the next few days. He explained that Cassie needed to be immediately transferred to another hospital.

It was 4:00 am as I was hearing this news and I was in shock. I had never heard of a congenital heart defect, let alone a specific type. I called Cassie’s father to come back to the hospital quickly so we could see her before she was transported. A few hours later I received a call from a doctor I had never met telling me Cassie needed a cardiac catheterization immediately in order to maintain the flow of oxygenated blood to her organs. I was distraught but told them to do whatever they needed to do. By the time I arrived she had already gone through her procedure and had even more wires than before.

Over the next few days I was approached by a large team of doctors and given a lot of information that was both anxiety provoking and scary. I was literally just getting through each day like a robot. I still had not even held my new baby, I was finally able to hold her at 3 days old. She had open heart surgery at five days old and the operation lasted 12 hours.  It was one of the hardest days of my life and the next nine days were a roller coaster ride that included post-operative seizures making it even more stressful.

At two-weeks old, Cassie was discharged.  This was both amazing and scary as I was a young mom who was in uncharted territory and since it’s been a long road.  Cassie has had four more cardiac catheterizations and another open-heart procedure due to pulmonary stenosis from scar tissue.

It hasn’t been easy and there were very tough times, but together Cassie and I have come through so much.

Most recently, my daughter and I, along with family and friends, raised funds at the Eastern Connecticut Heart Walk.  But our motivation doesn’t stop with Cassie. My grandson, Channing, has been diagnosed with a congenital heart defect. Because of continued fundraising, research and development of new interventions, my grandson has had the best care possible since his journey began less than 1 year ago.

I offer this advice to families that may be dealing with a CHD diagnosis.  Don’t hold your feelings inside. Share them, feel them. No matter what they may be. I kept my feelings hidden for many years and now with the birth of my grandson, all those feelings are coming back. If you need help, ask. And to those that support families of heart warriors please remember that their feelings of anxiety and fear are valid. They have literally fought with everything they have to keep their child alive and well. And that’s a fight I think we are all willing to keep on fighting.