Our Heart story

“Wounded hearts beat the loudest.” My name is Sarah. I am a wife and mother of 3 sons. My youngest—Greyson is a heart warrior, and this is our story.

My husband and I were surprised by the pregnancy of our third baby. Our first children, twins, were born 6 weeks early and required a NICU stay. With our single baby, I was picturing an easier pregnancy, delivery, and post-partum period. I was picturing a normal hospital stay without the NICU, feeding tubes, and scheduled feeds. However, after our 20 week anatomy ultrasound on March 15, 2018, I knew the experience I pictured would be extremely different from anything I had imagined.

“Something is wrong with the right side of your baby’s heart. It may not be survivable.” “Survivable,” a word that still haunts me today. We had our first pre-natal cardiology appointment the week following the ultrasound. It was at this appointment we received Greyson’s diagnosis--Pulmonary atresia with intact ventricular septum (PA/IVS) and Hypoplastic Right Heart Syndrome (HRHS). Essentially, our son would be born with only half of a functioning heart. This diagnosis was considered a critical CHD and his specific case was severe. We were told to expect multiple surgeries or even a heart transplant in his early life. 

All plans changed, and the dream of having a “normal” birth experience was gone. During this period, I was intensely grieving so many things: my son’s health, his future, and missing out on valuable time with my other boys to live away from home and within the walls of Seattle Children’s Hospital. It was so hard to know the most difficult challenge of my life was just around the corner, and I had no control over the situation. I felt very alone.

Our heart warrior and one of the greatest loves of our lives, Greyson was born in July 2018. His pre-natal diagnosis was confirmed at birth and his “treatment” plan was decided. He would undergo multiple open heart surgeries to allow his heart to palliatively function on the left side. After many ups and downs, and multiple hospitalizations, Greyson had his first open heart surgery, the Glenn, in November 2018 and his second, the Fontan, in November of 2021. He has no other expected open heart surgeries until a transplant sometime in his future. 

For now, Greyson is a “normal” 7 year old. He’s keeping up with his brothers, and he’s hitting all his important milestones. And for this, we are considered lucky. He’s funny, athletic, smart, and extremely feisty. You would never know of the battles he’s fought and won without seeing his bare chest. He amazes us everyday, and is our hero. 

Throughout my journey as a Heart mom, a certain quote has been branded in my mind, “Wounded Hearts Beat the Loudest.” It was a quote that brought me comfort in every frame of our journey, because while my heart was aching and wounded like never before, I knew I needed to make some good from this experience. It is my mission to bring practical comfort to other parents in a similar position. These kids and their families are expected to spend weeks, if not months, under the roof of Seattle Children’s. Not only are these kids the strongest warriors I have ever witnessed, but the parents are as well.

Heart parents will experience handing their infants to a stranger they must put their complete trust in to perform one of the most invasive procedures possible. They’ll stand by and observe their child getting poked and prodded multiple times daily. In some cases, parents go weeks without being able to hold their child. All this as they forego the comforts of their own home. 

My husband and I have been putting together and providing care packages to parents discovering their unborn child has a critical CHD, and plan to receive care at Seattle Children’s Hospital. In our packages we include items we found most helpful during our stays. To date, we have provided over 150 care packages to the prenatal Clinic at Seattle Children’s.

My hope is to not only be an outlet of emotional support to these families as they embark on the long and treacherous journey, but also to begin providing financial support as well. This is the hope of the future of “Wholeheartedly.”