Editors Note: Today, March 18, is Trisomy 18 Awareness Day. LifeSiteNews.com brings you the gripping story of one couple who fought the system to have their son Simon with Trisomy 18 treated as a person, not as a syndrome.
ST. LOUIS, Missouri, March 18, 2013 (LifeSiteNews.com) – Sheryl and Scott Crosier suffered four miscarriages before learning that Scott had an inverted X chromosome, a condition which causes girls to be miscarried. Two miscarriages later, in September 2010, the couple was thrilled to discover that they were pregnant again, and this time with a boy. They would now be able to offer their two other sons, Samuel, 7, and Shawn, 5, another playmate.
“Obviously we were overjoyed, but we were scared at the thought of losing another child,” said Sheryl in an interview with LifeSiteNews.com.
But after an ultrasound revealed a cleft lip and clenched fists, markers that not all was well with the unborn baby boy, doctors began pushing the parents to undergo amniocentesis. The pro-life parents refused the test, knowing that they would be fine with whatever child God was to give them.
“We wanted our child, special needs and all,” Sheryl said. The parents also refused the test because of the risk of miscarriage caused by the invasive procedure.
The doctors were concerned that the Crosiers' son may have Trisomy 18, a condition affecting about one in every 6,000 newborns, in which the baby has three copies of chromosome 18 in every cell of the body, rather than the normal two. The extra bit of genetic material causes serious physical and mental problems for the developing baby. Half of infants with this condition do not survive beyond the first week of life.
But even without confirmation from the test, doctors nevertheless peddled abortion to the parents as a way of dealing with the unborn boy’s apparent health issues. In fact, from the moment of the ultrasound onward, the parents were shocked and dismayed to discover how their team of medical professionals largely turned its back on their unborn son because of his perceived medical condition.
Discrimination in the name of health
On September 6, 2010, doctors told Sheryl that she must be induced early because of her unstable blood pressure and because the baby was experiencing growth restrictions. Looking over her medical records later however, Sheryl learned the true reason for her early induction. On her chart doctors had written: “Induction for fetal anomalies”.
During the labour, the parents accidentally learned through a nurse that if their son had been positively diagnosed with Trisomy 18, doctors would not have monitored the baby’s heart rate for signs of stress during the labour, nor would the doctors have permitted a C-section to save the baby’s life. The parents were thankful that they had not undergone the test when a C-section was required to save the little boy.
Simon was born September 7, 2010, weighing four pounds, three ounces. “We heard his first cry as he entered our world,” said Sheryl. “He was small. He had a bilateral cleft lip. But to us, he was absolutely perfect.”
A blood test three days after his birth confirmed that Simon had full Trisomy 18. From that moment onwards, doctors let the parents know that Simon was “incompatible with life” and began to ignore his needs.
Not only did it seem to the parents that doctors expected the boy to die quickly, but it seemed that they actually wanted to expedite his demise. Sheryl was pumping breast milk, but doctors would not allow it to be given to Simon. Instead, they gave him little drops of sucrose to calm him. But a nurse went to bat for the parents, getting doctors to allow the boy to be fed through an NG-Tube.
Looking at medical records later, Sheryl was shocked to read the doctors’ words approving the insertion of the nasal feeding tube: “For comfort feeds only.” The parents also discovered later in Simon’s records a “Do Not Resuscitate” order by doctors that they had never signed or consented to.
The doctors had at first given Simon medication to help blood flow between two of the major arteries connected to his heart. But after confirming the Trisomy 18 diagnosis, they simply took Simon off the medication. One heart doctor expressed his amazement to the parents that Simon did not succumb to his bad heart condition once he was taken off the medication. Time and time again, the parents heard doctors say to them that this or that treatment was not for Simon. The doctors’ constant refrain of “incompatible with life” branded itself on the hearts of the disconsolate parents.
“It is as if they were not treating him as a human being,” Sheryl said. “When you hear those words ‘incompatible with life’ it’s so dehumanizing. After his diagnosis, never were aggressive treatment options ever considered, all because of one extra chromosome on number 18.”
Every step of the way the parents contended with the medical system for the life of their son. While some hearts were changed in the process, many of the healthcare professionals dealing with Simon remained calloused towards the little boy and his needs.
“While going through this, we kept our faith and our hope and we just kept on fighting for our little boy. We wanted the doctors to look at our precious son as if he didn’t have that label. We wanted them to treat Simon with their God given talent as a physician and leave the rest in God’s hand,” Sheryl said.
Sheryl remembers that it was during this time that Simon was teaching his own parents the meaning of the words ‘parent’ and ‘love’. “My son taught me about compassion, about unconditional love. He taught me to trust in the Lord.”
Simon’s big brothers adored the newest member of the family. As time went on, they loved how Simon’s cleft lip made his smile bigger and more endearing. The family spent as much time as they could holding him close in the kangaroo style, singing to him, and reading to him. They loved him for who he was, problems and all. And they knew that Simon returned their love, in his own unique way.
The parents fought valiantly for the life of their son in the hospital for three months. Then, on December 3, 2010, Simon passed away.
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Sheryl recounted that at the moment of Simon’s passing, she told him that it was “ok for him to go to Jesus.”
The family was devastated by the loss of their son. The discrimination that they had experienced from the medical professionals who were not able to see the beautiful, cherished, and precious boy beyond his syndrome weighed heavily on the parents’ hearts. The family never wavered in their conviction that Simon had been truly sent from God and that he had a “divine purpose” on earth, just like every other person. They knew that part of his purpose was to effect change in their own hearts. They now saw that their own hearts had changed for the better because of Simon having entered their lives.
They say they now understood the meaning of the words of Jesus in the Bible (Matt 25:40): “As you did it to one of the least of these my brethren, you did it to me.” They learned that ‘quality of life’ is not the determining factor for a life worth living. Most importantly, they realized that because of Simon, they had learned the meaning of unconditional love.
“‘Quality of life’ is measure by love, and a family’s love does not count chromosomes,” said Sheryl. “This kind of love is an indescribable love that only God can give.”
The Crosier’s experience of learning the meaning of love from Simon is not unique. A group of pediatricians who recently surveyed 332 couples with Trisomy 13 and 18 children found that despite their severe disabilities, 97 percent of them described their child as a “happy child” and reported that these children “enriched their lives,” irrespective of the length of their lives.
The Crosiers believe that every family would be blessed to have a Trisomy baby, who could teach them to learn to value people for who they are, not for what they can do. Sheryl will tell anyone who will listen: “God didn’t bless us with a syndrome, he blessed us with a son.”
John Paul II once wrote: “Man cannot live without love. He remains a being that is incomprehensible for himself, his life is senseless, if love is not revealed to him, if he does not encounter love, if he does not experience it and make it his own, if he does not participate intimately in it.” Sheryl said that it is the giving and receiving of this kind of love that truly measures ‘quality of life’ for any baby with a poor diagnosis. She said if such babies have love, then it doesn’t matter what is wrong with them, for they have what is most important in life.
Sheryl and Scott, who are now 44 and 47, have made it their mission to raise awareness about how Trisomy babies are largely discriminated against by medical professionals. “They just look at our kids as if they have no value,” she said. “Our hope is that they will learn to look at them as children of God, as children created by the hand of God, as children that have meaning and purpose.”
Sheryl wrote a book about her experience titled “I’m not a Syndrome: My name is Simon”. She has become fearless in telling her son’s story at medical conferences, nursing schools, faith-based communities, and on radio shows. She hopes that Simon’s story will empower parents to become strong advocates for their children when medical professionals are more then willing to neglect and abandon them over health issues.
“Any time I can be a voice for our kids I will,” she said. “Our kids are not disposable, they are not defects.”
Bishop Emeritus Robert Hermann of St. Louis endorsed Sheryl’s book saying that it “celebrates both the pain and joy of love.”
“These parents have received the light of wisdom to realize that they are experiencing the kingdom of heaven within them when they take care of this child. Simon is a blessing to all he encounters. I am blessed to know him,” he wrote.
Sheryl and Scott say that they will be forever grateful for Simon teaching them that all life has dignity and value, that no one is disposable, and that no one is a defect.
“The Lord created each and every one of us, and knitted us in our mother’s womb for a purpose, no matter how short that life is,” said Sheryl.
If you or someone you know need a support group for caring for a baby diagnosed with Trisomy 18 or 13, please visit Support Organization for Trisomy (SOFT).
Sheryl’s book can be purchased here.
Visit Sheryl’s website about Simon here.