Book Excerpt of “My Name is Simon”

One of his most attentive caregivers, Catherine, called it the “Simon Effect.” She described it this way: “Simon taught all who cared for him that we all have an assignment from God, and He has allotted a specific amount of time for each of us to accomplish that. Simon was here on a special assignment, and so he didn’t need as many days as some of us do.”

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One of the reasons we agreed to no CPR was because time and again we were told that it could break Simon’s ribs. Also, the doctors did not feel comfortable intubating Simon. In fact, one physician insisted he would not intubate him. Again, we wondered if it was just because Simon had Trisomy 18? We questioned and challenged everything. We then demanded more clarification in his chart. The doctors sent a memo to all of Simon’s caregivers so this misleading “do not resuscitate” order wouldn’t impact Simon’s care again.
I thought of this episode much later during a conversation I had with my friend and one of the nation’s top academic experts on outcomes for children with Trisomy 18, Debbie Bruns. She explained, “The medical community knows certain medicine can cause a reaction, such as anti- seizure medicine. Let’s say a child like Simon codes (goes into severe cardiac arrest). Doctors are trained in this situation to administer specific types of medicine, sometimes regardless of taking into account additional factors.
The medical team makes a recommendation on whether a child should be partially or fully tube-fed based only on height and weight charts, for example, but never consider the adverse impact of removing this shared experience between child and parent. Even when a child can’t eat by mouth, shared experiences at the family table should be encouraged.
The same can be said of recommending or placing a Do Not Resuscitate (DNR) order in a chart for a child with Trisomy 18. The medical team is looking at paper protocols, and the parents are left to battle for their child. Even with more common diagnoses like Down’s syndrome, targeted protocols often don’t exist or may be based on outdated information.”
Despite the occasional disagreements, most of Simon’s nurses shared a deep devotion to him and were deeply affected by his spirit. One of his most attentive caregivers, Catherine, called it the “Simon Effect.” She described it this way: “Simon taught all who cared for him that we all have an assignment from God, and He has allotted a specific amount of time for each of us to accomplish that. Simon was here on a special assignment, and so he didn’t need as many days as some of us do.
“Simon taught me to look deeper for a purpose in life, no matter how little the soul, or how short their stay may be. He taught me to always persist and never give up. Every person has a potential, which is only limited by others. People will miss so much if they don’t look beyond the obvious physical challenges to the way that such precious people can change their environment and the people whom they come in contact with.”

Another nurse, Wendy, added: “When I close my eyes and think of Simon, I see a bright eyed, beautiful baby boy who came to offer us a fresh look at life. How blessed I am that little Simon’s life crossed paths with mine. Perhaps that was his mission . . . to leave us with his beautiful blessings to ponder and to teach us.

“What were these beautiful blessings from Simon? He showed us to treasure life and love. He gave us the gift of knowledge . . . that life, no matter how brief, and a baby, no matter how tiny, can make an impact on the world. He confirmed for us that life is fragile and that every moment counts. He taught us to soak in love, like he sweetly accepted the love given so tenderly by his wonderful family. He proved for us the need to slow down and enjoy the sweetness of one so pure from God. He blessed us with understanding that all life is beautiful end to end and encouraged us not to be afraid of living or of letting go. “

October 8 was a challenging day. Simon had four apnea episodes. The doctors and nurses told us that the frequency and severity of episodes usually indicated declining health.
At that point, I was getting very nervous about the weekends. Scott started to stay with me in Simon’s room on the weekends, and we asked Grandma Lois to stay with the big boys. Eventually we worked out a schedule where I stayed overnight during the week and Scott would stay overnight with Simon on the weekends. It was great bonding time for Daddy and Simon. It was also nice for Mommy to be with the big brothers at home.
During the week, I went home to shower every three days and then rushed back to the hospital. Fortunately, we only lived nine miles away. That day I was speeding home to shower because I was worried about Simon’s hearing test. While I was away to take care of tasks like that, Grandma Lois covered for me in Simon’s room for a few hours. My distraction led to me being pulled over by a police officer for speeding. I told him that Simon was in the NICU and was terminal. I also said I was trying to get home to shower quickly so I could get back to the hospital to be with my son. I remember telling the officer that I probably shouldn’t be driving. He agreed and asked me where I lived and told me to be careful.
On the way back to the hospital I noticed people taking walks and smiling. In my frustration and grief, I couldn’t help questioning their “normal” activities. Why didn’t they realize my son was in the NICU with a terminal condition? I couldn’t stop wondering, “Were they ever told their child was going to die? Have they ever lost a child?”
The results of Simon’s hearing test said he passed in his left ear but required a referral for the right. I wondered if he was deaf in his right ear. His nurse, Olivia, tried to calm me by saying “It’s OK, a lot of people only hear out of one ear.” Sandy, Simon’s night nurse, was even more positive about Simon’s hearing ability. Every time Grandma Lois snored, she said, Simon’s big blue eyes looked around to discover the source of the noise. When Grandma stopped snoring, Simon would suck on his pacifier and close his eyes. Sandy said she had to stop herself from laughing so she didn’t wake Grandma Lois up. Maybe Simon could hear better than the test gave him credit for.
We wanted to take Simon home, and we continued to ask his medical team about that possibility. They said that babies don’t typically go home while receiving infused medication. Prostaglandins, they added, are a short-term medication used before a patient undergoes surgery. They were also concerned about Simon’s risk of infection. His medical team advised us to consider stopping the prostaglandins so that nature could take its course. We resisted this advice because we believed this approach amounted to pulling the plug on our son. As Simon’s parents, our responsibility was to guard and defend him. Simon’s nurse Beth asked us if we would like a meeting with the hospital’s Ethics Committee. Before we could have this meeting, Simon’s medical team approved our decision to take Simon home on prostaglandins and stop the treatment at home.
Their best medical opinions about Simon’s future left little hope. They thought that if we stopped the medicine, his PDA would close and that Simon would pass shortly after. If we stopped treatment in the hospital and took him home, he would probably die within 24-48 hours after we got him home. We still believed taking our little boy home was the best choice for him and his family. At least if we were at home we could spend a few days with him. We were deeply disappointed to learn the pharmacist was not even planning on giving us more than a day or two of medicine.