“Incompatible with life.”
A horrific phrase that no parent ever wants to hear – and no doctor has a right to say.
All life is created for a purpose, and one hospital is proving that every child deserves a chance – and someone to fight for them.
Hearing that your baby has a life-threatening condition is every parent’s worst nightmare. And far too often when a serious diagnosis is made during pregnancy, parents are encouraged to terminate.
But no doctor can know what God has planned for each of us, and as medicine advances every day, so must the perceptions and attitudes of the medical community.
One genetic syndrome in particular has always been thought to be a death sentence for children – Trisomy 18.
Trisomy 18 is a genetic disorder that can cause congenital heart defects, developmental delays, and severe respiratory issues.
Doctors nearly always encourage parents to abort their child when this diagnosis is made during pregnancy, and often, little is done to help parents who refuse to give up hope.
There has been little to no support for the parents of these babies from the medical community.
They’re often offered no option but abortion, and some doctors go so far as to call parents “cruel” for going through with the pregnancy.
This outdated way of thinking is no longer part of the protocol at Children’s Hospital and Medical Center in Omaha, Nebraska.
Here, doctors are abandoning the old way of thinking in order to give children every possible chance when faced with this “lethal” diagnosis.
For this medical team, it’s simple: Every human being should be given the same level of care — the same chance for quality of life, no matter how long that may be.
Frightened parents with nowhere to turn are learning about Children’s Hospital in Omaha from support groups like SOFT, which offers resources for families facing the Trisomy 18 diagnosis, as well as other genetic disorders.
Doctors at the hospital know full-well – and are embracing – the fact that babies with Trisomy 18 can, and do, survive much longer with heart surgery.
These babies, given a death sentence in the past, are now living into their late teens. They’re making an impact on their families and communities in their short lives.
Short, perhaps, but no less valuable – years they gain because their parents fight for them.
Dr. James Hammel of the Cardiothoracic Department at Children’s in Omaha says that calling parents “cruel” for wanting surgery for their child is unbelievable. Without heart surgery, these infants will die.
But the surgical survival rate is thought to be as high as 90 percent, and of those children, half will live to at least sixteen.
Hammel states that while other hospitals are learning that there is great value in giving these children a chance, Omaha Children’s specializes in extending the life of children with Trisomy 18 with their complex team focused on the disorder.
“In the end, we will be judged by how we treat the most vulnerable people in our society,” he says, according to Live Action.
It is shocking to comprehend how many physicians in hospitals around the world still fail these children.
In fact, many institute a protocol referred to as “slow code.” Babies born with Trisomy 18 – or other disorders considered “incompatible with life” – are given basic care, but little is done in order to actually prolong their lives.
Sometimes, heart and respiratory conditions are treated, but not surgically fixed because doctors have the outdated belief that it won’t improve survival.
But, as reported by Live Action, surgery to fix problems like heart defects in children with Trisomy 18 increases hospital discharge and survival rates from 33 to 67 percent.
These kids continue to defy the odds when they are given the chance instead of discarded as unworthy of care… and when their parents are given an option other than aborting their child.
Kids like Bella Santorum, daughter of former Senator Rick Santorum, who has lived for years with Trisomy 18 because her parents and physicians continue to fight for her.
And Kayden McClanahan, given no hope at birth, just celebrated his 18th birthday, with his mother posting on social media about all of the amazing things he has done with the time he’s been given, including graduating from high school.
Tragically, doctors all over the world have also heard of cases in which prenatal testing showed that a child had Trisomy 18, and parents went through with an abortion due to pressure and negativity from doctors.
But we all know medical tests can be wrong, and this “incompatible with life” perception caused innocent children to die before further testing showed that their child did not have the disorder at all.
Only God should decide how much time we are given.
These children who are given a chance to beat the odds are often the ones who most inspire the rest of us, offering hope and wisdom beyond their years.
Do you think an outdated thought process within the medical community is depriving children of years of life? Leave us your thoughts.