Extra Grateful Hearts

By Kimberly Benson

I never would have imagined my baby girl would have open-heart surgery just weeks before her first birthday, during a global pandemic, but life has an interesting way of teaching us lessons and helping us grow. In fact, ever since receiving Amina’s after-birth Down syndrome diagnosis, my eyes have been opened and I’ve relearned what truly is important in this crazy journey we call life!

I will never forget the day I took Amina to the cardiologist for the first time; it was one of the many specialists on our list to see with a new Down syndrome diagnosis. I was terrified and because of Covid only one parent was allowed at the appointment. We were very hopeful that there wouldn’t be any issues because her pediatrician assured us she did not hear a murmur and there were no obvious signs of a heart defect. However, after performing the EKG and ultrasound, the doctor told me that he did see something but it would be OK and could be fixed. He said we would talk in a few minutes as he went to review the echo some more. I immediately FaceTimed my husband and we thought OK this doesn’t sound too bad, we can handle whatever this is. When the cardiologist came back in and started talking and drawing diagrams, we quickly realized he was talking about an open-heart surgery to repair a hole in Amina’s heart…an AV canal defect. I was completely floored and the tears just started swelling in my eyes. I kept it together as long as I could in the office trying to understand everything he was saying while taking notes and asking questions. I vividly recall walking out of those office doors, shaking with the baby carrier slung over my arm and the tears just falling looking at my sweet girl.

In the months that followed we did our research and came to peace with Amina’s upcoming surgery. Her cardiologist was always so calm and reassuring. He handpicked Amina’s surgeon from New York Columbia Hospital, known internationally for its cardiac surgery expertise.

In August 2020, I took Amina back to the cardiologist to discuss her surgery plan further. It was at that appointment that her doctor told us they wanted to do the surgery much sooner than originally planned anticipating a COVID surge come the fall. Another twist, I was not ready for! Again, this journey continues to teach me that things don’t always go as planned, but that doesn’t mean we won’t end up where we’re meant to be.

Two weeks later, on September 4, 2020, we put our trust and faith in God as we placed our daughter’s heart into the hands of a team of incredible surgeons. I don’t think there’s anything that really prepares you to hand your baby off to have her chest cut open, her heart stopped and placed on a machine to beat for her so her own heart can be repaired. Prayer, staying positive, and being lifted up by family and friends kept us sane that day. Six hours later, we got the call that surgery was over and successful. Tears of joy poured from both me and my husband. The longest day of our lives was over. Seeing Mina that first time in the PICU after surgery was one of the most heartbreaking yet incredible feelings in the world. Her little body had just gone through so much but how amazing that it was possible and that she would now be able to thrive.

Amina rocked her OHS with only minor issues and a 5-day hospital stay. She was a true warrior who continues to be my role model for strength and resilience! This heart journey was one of the most difficult roads on this special needs path, but it served as the biggest testimony to remain grateful for all we have, especially each other. Today Amina’s heart is fully repaired and we all have extra grateful hearts!

You can follow Kim and Amina's story on Instagram @being_amina_marie.