Law inspired by baby labeled “incompatible with life”

After doctors diagnosed little Simon Crosier with Trisomy 18 as a newborn baby, they labeled him “incompatible with life.” His mother, who refused an abortion, now fights for laws to protect parents.

HB113 is a bill which has recently been proposed in the Missouri House and would prohibit health care facilities and others from withholding life-sustaining procedures from a minor patient without the written consent of a parent or legal guardian.

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The bill is called, Simon’s Law named after little Simon Dominic Crosier who was diagnosed with Trisomy 18 and died after health care workers refused to medically treat him as any other child.

Trisomy 18 also known as Edward’s Syndrome is a genetic disorder which includes an extra chromosome 18.

When doctors could not convince Simon’s parents to have an abortion, they labeled him “incompatible with life,” after he was born.

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The couple had two sons before Simon with no major complications and then lost 6 children to miscarriage. When they became pregnant with Simon they knew they faced the possibility of losing him too.

Simon’s mother, Sheryl Crosier, was interviewed on Life Talk TV for their February 2015, episode and spoke about her precious child.

The pregnancy was full of anxiety,” Simon’s mother Sheryl Crosier said, “Thank goodness for our faith that kept us strong.”

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Sheryl said doctors encouraged her to have an abortion when her 20 week ultrasound revealed that their unborn son might have a cleft lip, “We were told some parents terminate for cleft,” she states.

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Cleft lips and clinched hands are markers for Trisomy 18 but Sheryl said the couple refused any testing because they had no intentions of aborting their son, regardless of any “genetic abnormalities.”

Sheryl said that when she reviewed her medical records later, she discovered that, even though they had not done any testing, her OBGYN had noted that he was inducing her for labor because of “fetal anomaly.”

Even though we refused testing – he already had his mind made up,” she notes.

Life Talk Host, Mark Crutcher pointed out, that Sheryl’s OBGYN was anticipating that the induction would cause the death of the unborn child.

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Sheryl said that during labor the heart monitor revealed that Simon was struggling and the couple had to demand a C-section.

Simon was born September 7, 2010, and he was small with a bilateral cleft lip.

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When Simon was three days old, doctors determined he had Trisomy 18 and his care began to dwindle.

We’ll never forget, that doctor walking into Simon’s room,” Sheryl said, “and saying, the results came in. Simon now has Trisomy 18.”

She then looked at us and said, ‘I’m sorry’ and she walked out of the room.”

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That’s when it all started – when he was labeled. Which transferred to them as incompatible with life…So, his care and his treatment changed dramatically after his diagnosis.

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“It seemed like they were always planning for his death and not his life,” Simon’s mother tells the Life Talk panel.

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Sheryl said that medical professionals told them that some parents just do not feed their children when they have this diagnosis.

She said that despite their continued statements that they wanted Simon, disabilities and all, the doctors took it upon themselves to stop feeding their son.

They weren’t feeding him. Anytime he fussed they were giving him drops of sucrose,” she stated.

Sheryl was pumping breast milk for her son and asked the nurse why they couldn’t use her milk. So, the nurse got the permission from doctors to feed Simon the milk, but after Sheryl received his medical records, she discovered that they were only authorized to “comfort feed.”

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They put the least amount of breast milk through his NG tube. So, even though we were saying that we were not here to expedite his death – we want Simon special needs and all.”

Sheryl said she was constantly asked, “Do you want to do TO Simon or FOR Simon,” as if their wanting to prolong his life was cruel or inhumane.

The doctors never gave Simon’s parents any options, Sheryl states, they took his care into their own hands and determined he was incompatible with life.

Simon survived outside the womb for 88 ½ days and he passed away on December 3, 2010.

On December 3, Simon’s oxygen saturation levels began to fall. We were told this is the end, nothing could be done,” Simon’s mother writes.

Simon drew his last breaths, I asked again what could be done and I was told “nothing.” At 10:45am December 3, 2010 the tears poured from our eyes and others around us as Simon left this world for his eternal home.

“Imagine watching your child take their last breaths, his oxygen saturation levels plummet and the medical professionals do nothing. Later, we found out there was a Do Not Resuscitate (DNR) in his medical file which explains why the medical professionals stood around and did nothing.

“If Simon was a healthy 3 month old it would have been an ER moment with people running to save my child. But because he was a child with chromosomal abnormalities, no one in the NICU did a thing.”

Three weeks after they lost Simon – Sheryl wrote a book, called “I am Not a Syndrome — My Name is Simon.”

It was in preparing for this book that Sheryl began researching their medical records and discovered that doctor’s had inserted a Do Not Resuscitate Order (DNR) order in Simon’s chart which the couple NEVER signed.

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Later, Sheryl met Kansas City Representative Bill Kidd who wanted to know about “futility policies”, he wanted her to work with him so hospitals would have to disclose if they have policies, like comfort feeding or DNR’s.

Rep. Kidd filed HB113 on December 3rd, called Simon’s Law to protect parental rights including any procedures for any minor child.

The bill has since been assigned to the Health and Mental Health Policy Committee.

A hearing has not yet been scheduled.

Sheryl told Life Dynamics that she is determined to change the law so no other parent has to go through what she and her husband went through with their precious Simon.

If passed in its current form, Simon’s Law would protect the rights of parents concerning any life sustaining procedures for their minor children. This includes all minor children, not just those with special needs, like Simon.

“My hope is that “Simon’s Law” will someday protect all minor children nationwide,” she said.

Sheryl has set up a website to tell Simon’s story, visit www.simonismyname.com

You can watch the current episode of Life Talk – here.

Comments

5 Comments

  • This is a story so close to my heart. My first little girl was born with anencephaly and she lived for 3.5 hours. I am so proud of you for fighting for you little boy to live. 88 days, his time on this earth, and his journey was finished, but it was his time, no one has the right to decide that he is not entitled to his time on this earth. I am so proud of you and your husband.

    Comment by Karen Andersen on March 9, 2015 at 10:35 pm
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  • A very brave lady and hope this law is passed to protect future families.

    Comment by Leanne on February 1, 2015 at 5:02 pm
  • My 6 month old was born with a unilateral complete left sided cleft lip and palate and gum notch we are from bolton my cleft nurse had to state that I didn’t want her to leave me and that they wasn’t to put a feeding tube in as I was started off the nurse had to ask me what to do when baby was born I had to tell them we would ring the cleft team at royal Manchester children hospital more maternity staff should be more trained in what to do when a cleft baby is born as it took the excitement of having our baby away as when she was born my partner had to go and ring the cleft team up instead of having first cuddles

    Comment by nicola on February 1, 2015 at 11:09 am

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