Heart Full

by Jess Quarello

Adeline wasn’t supposed to have heart surgery. She wasn’t going to have any heart issues at all based on our discharge at the hospital shortly after her birth, when they saw no cardiac problems. We were simply told to follow up with cardiology due to her diagnosis of Down syndrome.

Getting home from the hospital and the first few months with Addie were extremely overwhelming. I was dealing with a birth diagnosis of Down Syndrome and trying to wrap my head around our new reality. I was building her medical team and checking off the appointments recommended that we attend based on the handout on Down syndrome I was given at discharge. We went to see cardiology about two weeks after Addie was born. I was in a good mood and knew that it would be a quick appointment since we were told she had no issues at all. This was just to check a box.

We went in to the appointment and Addie had her first echo and EKG. Right afterwards, the doctor casually mentioned in our consult that Addie had what looked like a PDA. I had no idea what that meant and I was so confused. I told the doctor he must be wrong! The hospital cardiologist had told us she was totally fine and her heart looked great.

Our doctor could tell I was getting upset and calmly explained that a PDA is a hole in the heart. Addie would most likely require a Procedure down the road to correct this issue.

I was starting to have an anxiety attack. I was dizzy and overwhelmed, and ALONE I should mention! This was back when only one parent was allowed at the appointment due to Covid. I was angry at this situation and I was so mad at my naivety.

The rest of the appointment is a blur. The next thing I remember is being back in my car and crying. I was devastated. I was also so mad at myself that I went into that appointment with expectations that everything would be fine. This would be one of many experiences with Addie where expectations are NOT recommended.

Fast forward to June 23rd, 2021. We had been going to cardiology every few months to see how her PDA was doing. We were praying it would close on its own but alas, it did not.

We had her procedure done at Columbia in NYC. The hardest thing I’ve ever had to do was watch my baby being rolled away from me on a gurney. Her beautiful little face smiling at Mommy, confused why I wasn’t coming with her. Her heart was being mended while my heart was breaking in the waiting room.

Her PDA was closed through a cardiac catheterization procedure. Instead of opening her chest, they went in through her groin and placed a device in her heart to plug up the PDA. The surgery was successful. We were so happy and relieved.

We didn’t have to experience open heart surgery, and if I’m being honest, I’ve always felt a little guilty about that. I see my beautiful friends and their babies all around me having their chests opened and recovering. It's tremendous what these babies have been through. That said, the feeling of complete lack of control over your child’s health is universal regardless of how a heart procedure is done. It’s torturous to give your baby over to a doctor and medical team. It’s horrible to wait for results and constantly go in and out of the doctor’s office. It’s awful to see your baby struggle out of anesthesia. And it's awful to sit in the unknowing.

This journey with Adeline has been filled with surprises left and right. Each one has pushed me to a new place of resilience and strength. I am constantly amazed at the strength my little girl holds inside of her. She inspires me constantly.

We now go to cardiology once a year. I have developed a wonderful relationship with Adeline's cardiologist.

He proudly displays our Extra Lucky postcards in his office to provide support to his other patients going through similar experiences with disability motherhood.

I know that Adeline will have many more medical interventions and procedures as she grows. It's just par for the course with her diagnosis. This experience taught me so much. It taught me to question everything, and to always go in without expectations. It'll only disappoint you when things don't go the way you anticipated. My heart is so full of joy being Adeline's Mom. Reflecting on how far she and I have come always brings tears to my eyes. Thank you for reading our journey. Our hearts are full.