"Hypoplastic Left Heart Syndrome was the diagnosis we were given on January 13, 2015 when we went for an anatomy scan to find out if our little peanut was going to be a boy or girl. Big sister and big brother were with us, ages 7 and 5. We all entered the CHD world together that day. And our lives were changed forever. I was initially angry at God, confused and fearful. But we were determined to do everything possible to give Jacob the best outcome.
For years we did surgeries, therapy sessions, tests. Whenever they mentioned surgery, they always made sure to mention the word palliative. That word palliative. It does not mean cure. It means dealing with the symptoms and providing relief so as to improve and extend life for patients. There is no cure for CHD, the most common birth defect that impacts more than 1 in 100 children every day. And their families. Every procedure is considered palliative and anyone with CHD requires lifelong care.
On every road, we experienced a mixture of hope and heartache. It hurt, it was hopeful, then it hurt again.
Last year, we took Jacob to Omaha for a heart cath procedure. We learned that Jacob was in acute heart failure and he was immediately admitted on medication with discussions of heart transplant beginning. We went through the evaluation for transplant only to learn that Jacob had too many antibodies and would most likely have acute rejection. We weren’t given many options and in the midst of this Jacob had a cardiac arrest and was placed on ECMO. We were in a very dark place without a lot of hope.
We started reaching out to other institutions and were directed to Lurie in Chicago. Lurie accepted Jacob - on ECMO. Lurie is one of few hospitals that will transplant kids who have high antibodies. We just had to find a team to get him there. On July 18, a team from Texas flew Jacob from Omaha to Chicago -on ECMO - where our journey to transplant began.
We received the gift of a new heart on October 21, 2020. We were absolutely ecstatic. Heartache and hope intersected in a way that we never experienced before. To know that one family was saying goodbye and giving life to our baby boy was the most surreal experience. After 6 months in the hospital, we decided to begin intensive outpatient rehab.
But then, on January 13,2021 everything shifted again. Literally 6 years to the day we had received his HLHS diagnosis. Jacob had a pulmonary embolism that led to a cardiac arrest. Four code calls. His brain suffered terribly. We knew he was tired. We knew God would take him home. And heal his heart for eternity. We said good-bye to our beautiful boy on January 19.
Jacob was our glimpse of heaven here on earth. He taught us so much. He taught us to be thankful everyday. To not take for granted the small details. That boring is good. I took the heart stickers off his chest and told him to go be free and whole and kissed him once more. Daddy kissed him once more. His older brother and sister made imprints of his hand and a memory box. And their friends helped them. Yes, other kids my children's age joined them in their grief that very day at the hospital. They are amazing kids. Not many adults can join someone in grief. And they did. A lesson to be learned. Sit with people in their grief. It was an absolute blessing. Jacob fought with a determination and resilience that was and is inspiring.
In honor of Jacob, we'll move forward with hope over heartache, while very painfully understanding that both can exist at the very same time." - Helen Wilkins
To stay in touch with Helen and continue to learn more about their family story, find them on social media at @hopeoverheartache