Inside Voices - Michaelmas 2013

Voices Online Edition
Vol. XXVIII, No. 3
Michaelmas 2013

Hope in Our Hearts

by Sheryl Crosier

Simon Dominic Crosier was born on September 7, 2010, in St. Louis, Missouri. He was diagnosed with trisomy 18, and lived for three memorable months before passing away on December 3, 2010. Despite his disabilities, Simon had a huge impact on all who came into contact with him.

Trisomy 18, also known as Edward’s syndrome, involves an extra chromosome in the sequence of 18 — just as trisomy 21 affects the 21st chromosome for people with Down syndrome.

The medical community looks at statistics and too often decides these kids with special needs aren’t worth the effort. Many say: “What’s the point? They’re going to die anyway.” Ninety percent of babies with trisomy 18 have heart defects and 95% aren’t brought to full term. Many are aborted when their conditions are revealed during prenatal testing. Only one in 6,000 comes into the world.

Struggling with the fragility of your child’s life is one thing. Fighting the popular pragmatic culture that measures human life in terms of dollars instead of dignity is quite another. “Our kids are not disposable and deserve every consideration,” said Dr. Steve Cantrell, the father of Ryan, who died of trisomy 18. “The souls and spiritual essence of our children are not disabled. Their physical handicaps exist but their desire to thrive is not diminished.”

Dr. Stephen Braddock, director of medical genetics at Cardinal Glennon Children’s Medical Center in St. Louis, adds: “I always teach new physicians that children with chromosomal conditions haven’t read the statistics. These families deserve an informed and thorough discussion of challenges and options they face.”

Dr. John Carey, a pediatrician and specialist in medical genetics at the University of Utah, believes: “It’s important for those of us who have the privilege of caring for children with complex conditions to stop, listen, contemplate, take off our shoes, and walk with our fellow traveler.”

If only we knew these compassionate healers when our Simon was alive.

It was after six miscarriages that we found we were expecting in early 2010. At the 20-week ultrasound my husband, Scott, and I, along with our sons — Samuel, age 7, and Sean, age 5 — were overjoyed that we were having a boy, but terrified of losing another baby. Prior to this comprehensive ultrasound, I had undergone many tests early in the pregnancy. Each ultrasound indicated our child was developing and healthy.

We were heartbroken to learn the 20-week ultrasound showed markers of trisomy 18. Our son Simon had clenched hands and a cleft lip. Even though the ultrasound doctor encouraged an amniocentesis, we refused. After experiencing the emotional trauma of losing six children to miscarriage and the risk of a miscarriage by an invasive procedure, we would never do anything to harm our little boy. I could never forgive myself if something happened to Simon. We continued to embrace hope. Our faith in the Lord would carry us through the possible storm of another pregnancy.

As we were leaving one of the excruciating long ultrasounds, the doctor and sonographer cornered Scott and me in the doorway. The doctor told us without emotion: “You know there are parents who terminate for cleft lips.” We were saddened and sickened by such a callous remark. It was as if the doctor wanted us to follow his path of destruction for our child. This was our boy — our son — for whom we had waited so long. Our response was: “No, we’ll never have an abortion no matter what. We are proudly pro-life. We have hope and put our faith in God.”

As the pregnancy continued, my doctor became more and more distant and showed no compassion. At one of my check ups, he said, “Sheryl what do you want to hear? There are problems.” We told him it was clear that he did not have hope in our little boy — but we did. We expressed many times to this physician that our faith in God would support us if he was determined not to.

My OB/GYN decided to schedule an induction because of my increasing blood pressure. He said Simon probably was “growth restricted.” Later, I discovered that my medical records stated: “Induction for fetal anomalies and maternal gestational hypertension.” Several hours after being induced, doctors noticed deceleration of Simon’s heart rate. We made it clear that any signs of distress should lead to a C-section.

On September 7, 2010 at 5:40 pm, we heard the first cry of Simon Dominic Crosier as he entered this world. Simon weighed 4 pounds, 3 ounces. He was 17 inches long. Simon was small with a bilateral cleft lip, but he was absolutely perfect to his adoring family!

After delivery, Simon was taken to the level III neo-natal intensive care unit (NICU) in the hospital. He was put on a continuous positive airway pressure (CPAP) machine to provide breathing therapy, fed total parental nutrition (TPN), and given platelets. He also had bilirubin lights for jaundice.

On Day 2 of Simon’s life the echocardiogram revealed that his heart was broken: in more clinical terms he had a ventricular septal defect (VSD; valve doesn’t fully close), coarctation of the aorta (pinched aorta), and a patent ductus arteriosus (PDA; blood bypasses the lungs preventing oxygen from circulating throughout the body). Simon also had pulmonary hypertension. Immediately, caregivers started Simon on medicine called prostaglandins to keep his PDA open. We were told this medication was crucial and in a sense his “lifeline.”

On Simon’s third day of life, he was diagnosed with full trisomy 18, also known as Edward’s syndrome. I’ll never forget how the neonatologist walked in Simon’s room and said matter-of-factly: “The results came in, Simon has full trisomy 18.” She added, “I’m sorry,” and walked out of his room.

Once Simon was diagnosed with trisomy 18, his care changed dramatically. We were told our son was incompatible with life. How dehumanizing! Because of his extra chromosome, medical treatment changed to comfort care and we began to hear doctors say, “not for Simon,” when aggressive treatment options were considered. We weren’t told about relevant research on outcomes or survivors. We continued to pray for the maximum time with Simon.

I would say, “We want Simon special needs and all.” My husband would emphasize, “We’re not here to expedite his demise.” As parents, our wishes were clearly communicated.

A few weeks after Simon started receiving prostaglandins for his heart, the medical team advised us to consider stopping the medicine so “nature could take its course.” We resisted this advice because we believed their 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, informed us that if the medical team knew Simon had trisomy 18 before delivery, they would have resisted any life-saving measures and not started the prostaglandins. She asked if we would like a meeting with the hospital’s ethics committee, and here we expressed our passionate desire to offer our son the very best medical care available. We hoped to take him home if possible.

Nurse Lola even recalls walking out to the parking lot after her shift and overhearing another nurse make the comment, “Why don’t they just get it over with?”

After many discussions, Simon’s medical team approved our decision to take Simon home on prostaglandins and stop his treatment at home. We were deeply disappointed to learn doctors didn’t even plan on ordering more than a day or two of medicine for Simon. We expressed our frustration forcefully to the ethics committee. Their best medical opinions about Simon’s future left little hope. They said if we stopped his medicine, his PDA would close and Simon would pass shortly after. If we stopped treatment in the hospital and took him home, he would probably die within 24-48 hours. To us it seemed as though some medical professionals were always planning for Simon’s death, not his life.

One nurse later explained to me, “The atmosphere with some of my colleagues walking into Simon’s room was like walking into a funeral, like his death already happened,” she recalled. “Because of his heart rate and oxygen saturation rates, they acted as if there was not much hope, nothing further they could do. But the child’s eyes opened and I looked into his eyes and told myself, Simon doesn’t need this atmosphere. Give him what he deserves. He was like Prince Charming to me. I connected with Simon through my heart and not as a medical case. He drew me to him with silent eyes.”

I later learned that after Simon was diagnosed with trisomy 18, he wasn’t offered breast milk or formula. Although I was pumping breast milk, the medical team wasn’t using it. Instead they gave our little boy drops of sugar water when he fussed. Looking back it, it pains me to realize our little boy was hungry. Only after Nurse Lola went to bat for us did Simon’s physicians finally agree to give him breast milk via a nose tube. I had to ask if we could instead put breast milk in a syringe to feed Simon when he fussed. Again our supportive nurse Lola got approval.

Medical caregivers informed us of an ominous fact. Some parents of children with similar condition don’t feed their babies. We were shocked!

Despite all the discouraging news, our Simon was living. He carried on in the face of doctor warnings that he wouldn’t make it past the first week. He was proving to everyone that he was not incompatible with life. His life was God at work. We faithfully advocated for our child — and God granted us precious hours and days with Simon to care for him.

Bishop Robert Hermann of St. Louis, a holy man and personal friend of our family, puts it this way: “These parents have received the light of wisdom to realize that they are experiencing the kingdom of heaven within them when they are taking care of this child,” he said. In sincere union with Bishop Hermann and the precepts of our mother Catholic Church, my family believes that the right to life comes from the creator of life.

As Simon continued — with the Lord’s help — his struggle for life, the medical team encouraged us to stop using the bag and mask during our son’s frightening apnea episodes. I was enjoying a rare opportunity to have lunch at the hospital down the hall from the NICU with the mom of a baby with trisomy 21. As I walked back into Simon’s room I immediately noticed something very wrong. I screamed, “His monitor is off!” A nurse told me that one of his doctors turned it off. This was the same doctor who kept continually advising, “let nature take its course.” When I asked him why he did this, he said we should enjoy our son without the bothersome noise of his monitor. Again, I responded angrily, Simon was having apnea. We relied on the monitor to tell us if our son stopped breathing. His doctor was talking casually about a matter of life and death.

During the last week of Simon’s life, his oxygen needs in-creased while his heart rate dropped. At this point the medical team told us his CPAP mask wouldn’t help and would be uncomfortable. We wondered why; didn’t he need more assistance with his breathing? I felt completely helpless to comfort my precious son.

We asked Simon’s doctors to look at Simon as though he didn’t have the label of trisomy 18. We wanted them to treat Simon with their God-given talent as physicians and leave the rest in God’s hands.

Again, Bishop Hermann explains why children who have special needs have an important role in God’s eternal plan: “When we look at a special needs child, Jesus is asking us directly, ‘Do you see me?’ These children draw out in their parents strength and grace they didn’t even know they possessed. They are a gift from God — to families, communities, and the Body of Christ. Their ability to edify and inspire unconditional love can change our self-image from a culture of death to one that grants all God’s children the dignity they deserve.”

Yes, Bishop Hermann, my Simon inspired me to love more deeply than I ever knew I could.

On December 3, 2010, Simon’s oxygen saturation levels began to fall. We were told this is the end — nothing more could be done. At 10:45 a.m. on December 3, 2010, the tears poured from our eyes and others as Simon left this world for his eternal home.

It was absolutely heart-wrenching to look through baby Simon’s medical records after he passed away. To see indifferent clinical phrases like “comfort feeds-only” and DNR (do not resuscitate) in his records was sickening. We never signed a DNR order!

In my struggle to deal with my grief and understand Simon’s purpose during his short life, I decided to write a book to honor him. Simon’s story is being revealed to people all over the world. The name of Simon’s book is I’m Not a Syndrome — My Name Is Simon. If you look closely at the cover photograph of my beautiful son, Simon will tell you “I love you” in sign language.

A friend and fellow trisomy mom, who is a writer and researcher, describes the book this way: “Sheryl Crosier’s memoir, I’m Not a Syndrome — My Name Is Simon, of her journey during her pregnancy and her infant son Simon’s short but important life, is a story of the heart and spirit. It is also a story of the head that explores the capabilities and constraints of modern medicine and policy, parental rights and ethical decision making.” Those kind words come from Pamela Healey, PhD, mother to Conor, who died with trisomy 18.

God did not bless us with a syndrome. God blessed us with a son. His name was Simon. Simon’s story is filled with compassion and outrage. It is a story of a child knit together by the hand of God. Each of his days was written and ordained. Because of our hope in the Lord, we will be reunited with all of our children in heaven again.

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Sheryl Crosier, MA, MBA, is the Chapter Chair for SOFT-Support Organization for Trisomy 18, 13, and related disorders. Sheryl and her husband Scott and their two sons live in St. Louis.

Her book, I Am Not a Syndrome — My Name Is Simon, was published in August 2012 by All Star Press—Books That Change Lives. It’s also available on Amazon and Barnes and Noble for download or as paperback. Simon’s website, simonismyname.com, has information on the book as well as on trisomy-related conditions. A portion of proceeds from every sale of this book will go to SOFT.