Michael and I finally had the opportunity to meet with a family that has a 3-year-old with HLHS. The Shumway family lives in Provo and they have 7 children total. Timothy, who has HLHS, is the youngest. Interestingly enough the Shumway’s brother, Doug Shumway, is a 3L at BYU Law with me. We met at their home and were privileged enough to visit and interact with Timothy. The Shumways were so kind and open about the experiences they have had with Timothy both before his delivery, throughout the surgeries, and up to his current condition. I am very thankful for the willingness they had to share their very private, personal, and emotional experiences with us.
There are several significant advantages that they have over us. First, Kathy, Timothy’s mother, is a super mom; she is a much stronger individual both spiritually and temporally than I am. This attribute has dramatically impacted the success that Timothy has had throughout the first 3 years of his life. In addition, Timothy’s father is a professor at BYU, and through his employment has financial stability and exceptional healthcare benefits.
It was amazing to meet Timothy and discover a 3-year-old who ran, played, and even jumped on the trampoline with Drake and Warner. Besides his faint sterna incision scar, he is a normal 3-year-old. Actually he is developmentally advanced for a 3-year-old.
Kathy shared with us many things including her thoughts and struggles through each of the surgeries, how Timothy coped with each of the surgeries (both mentally and physically), and how the family coped with having their mom away from the home so much. In addition, she shared photo’s from the surgeries and hospitalizations; she even shared the itemized hospital bills for each of the surgeries.
There is one statement that the Shumways shared with us that pinpoints the decision that every parent having an HLHS baby must decide. Kathy said, “You have to be prepared to deal with and accept the very worst HLHS situation that could happen.” They decided that no matter what condition Timothy ended up in, whether he died during the surgeries, lived until he was 20, was mentally/cognitively normal, or if he had severe mental delay, they were prepared to accept the circumstances.
Obviously this is where the similarities in our decision end. Michael and I agree that we do not want to go through the struggles associated with the surgeries to have our baby die at 2 weeks, 2 months, or 2 years. We do not want to see a young child deteriorate knowing every day that their condition gets worse. Even though dealing with the death of a child results in extreme sadness and heart wrenching grief I choose that over looking into the face of my 5-year-old and seeing the recognition and realization in his eyes that he is dying. Furthermore, we do not want a child to have to live and suffer through the surgeries and then have to deal with mental or physical handicaps.