My name is Sheryl Crosier and most importantly, I’m Simon’s mom. I am also Simon’s voice and the voice of our most vulnerable children. The lives of children, regardless of the diagnosis or syndrome, possess inherent dignity and value and deserve the best care. Our remarkable son, Simon, died after 88.5 days of life.
I still remember the joy we had on September 7, 2010 at 5:40pm. We heard the first cry of Simon Dominic Crosier as he entered this world. Simon weighed 4lbs. 3ozs. He was 17 inches long. Simon was small with a bilateral cleft lip, but to our family, he was absolutely perfect!
On Simon’s third day of life, he was officially diagnosed with “Full Trisomy 18,” also known as Edward’s Syndrome. I will never forget, the neonatologist walked into Simon’s room and said, “The results came in. Simon has full Trisomy 18.” She then said, “I’m sorry and walked out of his room.”
From that moment on in the NICU, we were not made aware of the outcomes and survivors. We didn’t know what to do. We were frightened. We felt very alone.
Simon was now “labeled” with Trisomy 18 which translated in medical terms to “incompatible with life.” In addition, care and treatment changed dramatically after the diagnosis. Because of his extra chromosome, now we were hearing, “not for Simon.” We wanted Simon to have every opportunity to live. We wanted his time here to be valuable no matter how long or short.
Listen to these words, “incompatible with life.” How dehumanizing and harsh and to hear “not for your child,” when aggressive treatment options were considered. Medical caregivers didn’t even feed him breast milk or formula. I was pumping breast milk and they were not using it. Instead they gave our little boy drops of sugar water called sucrose whenever he fussed. Looking back, our little boy was most likely hungry. We were fortunate Nurse Lola, went to bat for us. Simon began to receive breast milk via nasogastric tube.
It came to me at 3 am, I wondered if we could put breast milk in a syringe to use instead of sugar water when he fussed. Later that morning, our supportive nurse Lola got approval. The medical caregivers then informed us that some parents don’t feed their babies. We were shocked they even shared this with us!
But I vividly recall having two babies across the hall from Simon with Trisomy 21 or Down syndrome. I witnessed their treatment and intervention, x rays, bottle feedings, surgeries, and even chemotherapy. Why? Simon also had one extra chromosome. To us, it seemed as though some medical professionals were always planning for Simon’s death, not his life.
“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.”
After Simon died, trisomy investigator, Dr. Debbie Bruns with TRIS-Tracking Rare Incidence Syndromes, led me to SOFT-Support Organization for Trisomy. Last summer we attended our 3rd SOFT conference in Rhode Island. One of the values of SOFT is that it brings families together from all over the world to celebrate all of our children with trisomy. SOFT offers friendships and comfort to those who still have their child and those who have lost their child.
Unfortunately, support organizations, such as SOFT are not shared with parents. So parents don’t often meet others who could give them valuable information of children living with the genetic condition. Our SOFT family understands how valuable our children with trisomy are, but at this Rhode Island conference, we had the opportunity to tell our story to a filmmaker.
Simon’s story is documented in his book, “I Am Not a Syndrome – My Name is Simon.” It is reaching people all around the world. It is amazing how many hearts Simon continues to touch. Our children are a blessing and as Dr. John Carey, a pediatrician and specialist in medical genetics at the University of Utah, quotes, “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.”
We are changing hearts and increasing awareness of this genetic discrimination by exposing the truth of what happens in hospitals, and empowering parents to make sure their children are getting care.
Simon has inspired me to continue to increase awareness through his book, speaking engagements, news reports, documentary, radio and television interviews, newspaper articles and medical journals.
Oh, I will never forget, on December 2nd, how Simon was fussy and upset. I tried holding him in many positions, wondering if reflux or breathing problems were causing him to be uncomfortable. His saturation levels were consistently dropping and I felt extremely helpless.
The next morning, Simon’s oxygen saturation levels began to fall further. We were told this is the end – nothing could be done. Simon drew his last breaths, I asked again what could be done and was told “nothing.” At 10:45am Friday, December 3, 2010 the tears poured from our eyes and others as Simon left this world for his eternal home.
Later on we found out that there was a DNR. Now that explains why they did nothing. We never signed a DNR.
You know, if he was a typical, healthy 3 month old, it would be an ER moment with people running to save my child. But because he was a child with trisomy, nobody in the NICU did a thing.
On top of that, the only food he was given through his nasogastric tube was comfort feeds. This means the minimal amount of food. If Simon wouldn’t have stopped breathing, he would have been starved to death.
Since we refused morphine, Simon was given Adivan/lorazepan twice before he passed. Later, one of Simon’s nurses informed me that this drug is contraindicated in apnea. Simon had apnea. Would you administer medication if you knew it was contraindicated?
You see, like many other children with trisomy, Simon’s diagnosis had a “label” on it. He wasn’t treated for his conditions and medical care was withheld.
The value of children with trisomy, remind us of our humanity, family and valuing every day. These children are very compatible with life, the best way to DO life. Our children with trisomy remind us that nobody is perfect. We are not valued by our intelligence, athleticism, etc. God values us as human beings. Our family’s love does not count chromosomes. And families, like ours, clearly see that quality of life is measured in love.
Unfortunately, in the eyes of the medical community, a child with this syndrome (trisomy 18) is considered “incompatible with life.” It is heartbreaking that children with a trisomy diagnosis are never given the chance to be born, once the diagnosis is made prenatally. In fact, 90% of babies diagnosed with trisomy 18 are terminated. C-section deliveries are not offered or denied to those mothers who have received the “label” or prenatal diagnosis of trisomy. In addition, several OBGYN’s in this country induce the mother early. The baby then dies or they put the baby in the mother’s arms to die, not providing any assistance with oxygen, etc.
Like our Simon, once and if these babies are born alive and the diagnosis is made after birth, care and treatment is many times withheld. Comfort care is the only option sometimes given to these parents and their babies are not fed, or only given drops of sugar water-sucrose. If the child has apnea, many times they are not assisted and die. And too often, medication given by medical professionals is overdosed and the child dies.
It’s horrible that medical information is not shared with parents. Many times, DNR-Do Not Resuscitate is put in the child’s medical charts, without the parent’s consent. Many children with trisomy die because of DNR’s. Other parents, like us, discover this in their child’s chart after they die.
In many cases we know that children are being administered medications that are contraindicated for their symptoms resulting in their premature death. We may call this euthanasia of children with trisomy.
Our family doesn’t believe in random chance. Simon had a name and continues to have a purpose. My family, as well as countless others we’ve met in the trisomy community, believe the best interests of society are always bound up in caring for and valuing the most vulnerable of its citizens. God did not bless us with a syndrome. God blessed us with a son. His name will always be Simon.
For more information on Simon’s book please visit or https://allstarpress.com/i-am-not-a-syndrome-my-name-is-simon-in-e-book-or-print/ or www.simonismyname.com A portion of proceeds from every sale of this book will go to SOFT, Support Organization for Trisomy. For more information on SOFT, please visit www.trisomy.org