Sheryl Crosier ran screaming down the hall of the hospital. Her infant son’s monitors were silent. She thought he was dead. 

Crosier had just returned from eating lunch with a mom of another child in the hospital when she realized her son Simon’s vitals were not on the screen. She found Simon’s doctor, who told her nonchalantly that he had turned off the monitors. “You don’t need any beeping monitors. You just need to enjoy Simon.” 

Crosier, mother of three boys, had already lost six babies to miscarriage. Now she was fighting for Simon’s life.

‘He’s Going to Die’

Simon Crosier was born in Missouri. At three days old, he was diagnosed with Trisomy 18, or Edward’s Syndrome. Simon went into the NICU, the neonatal intensive care unit. In general, complications associated with the syndrome are fatal, but some patients live years after their diagnosis. It’s not as if his mom didn’t have a reason to worry. “[The doctor] would say weird things like ‘Maybe it’s time for Simon to go to heaven.'”

Crosier began noticing a difference between how the nurses and doctors treated Simon and how they treated other babies in the NICU. They didn’t care for him the way they cared for the other babies there. “We were not given any resources. All we were told was ‘He’s going to die. He’s going to die.'”

The medical staff seemed to want to hasten his death. Simon was being given prostaglandin to treat a heart defect. The nurses and doctors tried to talk the Crosiers into taking him off the medication.

They also wanted to give Simon another medication that could’ve proved fatal. Once, in the middle of the night, he began to fuss. A nurse practitioner came in and asked Crosier’s husband if he wanted to give Simon morphine. Crosier wondered why the hospital wanted to give a fussing infant morphine. The nurses and doctors continued to push the Crosiers to let them give Simon the drug. Crosier thought about when her older children were infants and fussy. She’d call the pediatrician and walk them around the house. The doctors never told her, “Oh, let me prescribe morphine,” she said.

‘What Just Happened Here?’

One day Simon’s oxygen levels started to fall. Crosier and her husband tried to get the nurses and doctors to help Simon. “We were told that ‘There’s nothing we can do for him,’ or ‘This is Simon’s time.'” At 10:45 a.m. on December 3, Simon died in his father’s arms. Simon lived for 88 1/2 days. He was in the NICU his entire life. 

“It’s painful to see your three-month-old baby … looking at you so absolutely helpless. Here we are looking at these so-called experts that we paid for to be there and nobody’s doing a thing to help our child. So, nothing was done. There were no monitors beeping, they shut all that down. And then, it just got to the point where we’re just like, ‘What just happened here?'”

Within weeks after Simon’s death Crosier obtained his medical records. In them, she found a Do Not Resuscitate (DNR) order. The finding shocked Simon’s parents. They said, “‘Wait a minute, we didn’t even discuss this with [the doctors].’ There was no consent on our part. If somebody has a DNR on their chart, [doctors and nurses] do nothing.”

Further, Simon’s records contained an order for “comfort feeds.” Crosier found out that “comfort feeds” means the patient is given very little food — not enough to be nourish the body. “It means they starve you.” Crosier remembered when the nurse practitioner wanted to give Simon morphine. “He was hungry.” He didn’t need morphine, he needed food.

His Life Was Disposable

Without parental consent, the doctors had placed a DNR order and a “comfort feeds” order in Simon’s chart.

Doctors also diagnosed Simon with apnea, and then gave him a medicine that might stop him breathing. “They gave him Ativan. … That is a medication that is contraindicated for patients with apnea. A good pharmacist of ours said, ‘I wouldn’t give Ativan to an adult patient [with apnea], much less an infant.’ It suppresses breathing.” The hospital gave Simon Ativan twice before he died.

“There were a lot of things that they did. Here we’re battling to protect our son and his dignity and his life and you know, his rights were violated. We know that now. We know that our parental rights were pretty much stripped away. Someone else decided that his life was disposable.”

Later, nurses told Crosier that their hands were tied. The doctors had already made up their minds about Simon and his diagnosis. 

My Name is Simon

Crosier found out about the Support Organization for Trisomy 18, 13, and Related Disorders — called S.O.F.T. for short. Through it, she met a lot of families. She realized there were lots of kids living with chromosomal disorders. That’s when she decided to write Simon’s story, called I Am Not a Syndrome: My Name is Simon.

She now helps other families navigate their child’s illness. She comforts parents whose child has recently been diagnosed with a disease or syndrome like Trisomy 18. She speaks at hearings for Simon’s Law — a bill that requires hospitals to obtain parental consent before putting a DNR order in a child’s medical chart. Some states have passed it and others are working to do so. She also speaks at Right to Life events.

After Simon died, Crosier went through “deep, dark grief.” Still, she knew the Lord was with her. “Life becomes — it can become very dark. And we know this life is difficult but you just hang on, you know? ‘I’m holding onto your coattails, Jesus! Okay, you’re going to get me through this. We’re going to keep on going.’”

“I can see the beauty now from what we’ve gone through. You know, [the Lord] has plans for us to prosper. Sometimes just the compassion, I mean, I wouldn’t be able to have that kind of compassion for other families if I hadn’t gone through it. And so, it can be a beautiful thing and this life is only temporary — that’s what I hold onto. … I can’t bring my Simon back, but if we can save another life it’s all worth it.”