Today on Trisomy 18 Awareness Day I want to reflect on what it means to be the parent or loved one of a person given a diagnosis labeled “incompatible with life”. What it means to love and care for someone with a diagnosis that clearly is NOT “incompatible with life”, proven by the hundreds of children and adults I personally know including my own child who lived for nearly six years.
We live in the 21st century, our capabilities of medical interventions are revolutionary yet many medical professionals still cling to an antiquated thinking that people with Trisomy 18 are undeserving of medical care.
Statistics once said that only ten percent of babies that survived to be born with Trisomy 18 would make it to their first birthday. Today those numbers have dramatically increased to over forty percent in more recent studies. Why is that? Could it be that we have social media to thank for that? Social media has helped bring awareness to Trisomy 18 through support groups and organizations. Parents that were once left to the mercy of grim mis-information supplied by their healthcare providers are now turning to social media outlets to find hope in groups of parents who advocate tirelessly for their children to have fair and equal medical interventions.
This movement is forcing healthcare providers to reevaluate their stance on their willingness to care for children with Trisomy 18. Unfortunately, there are still those who refuse to move into this new era, who cling to their stance that it is unethical to prolong a life of suffering upon these children. That they will tear families apart and ruin their siblings lives.
The majority of families will tell you this simply is not true and only speak of the immense joy and love that these children bring to their families. And that being the parent of a chromosomally enhanced child is a joyous labor of love.
More and more parents are calling out these doctors and facilities for their discrimination and seeking out “Trisomy friendly” options. The real question here is why such kick back from the medical community? A group of people committed to helping those in need. Why is there little to no value placed on the life of a person with Trisomy 18 even when they fight their hardest to prove their worth? When they are proving day after day that interventions do improve the quality and quantity of their lives. They prove they are capable of learning, communicating in various ways and having meaningful relationships with their families and communities. Why do so many double standards exist within the medical community? Resources will be tirelessly poured into other diagnosis’s with far more dire statistics but when a chromosome anomaly is added to the equation thoughts suddenly change. Both are equally deserving of life, the medical community at large simply does not see it that way.
The real question is “what can I do to help the Trisomy 18 community?” As parents we can stand up to healthcare providers and demand equal and ethical care for our children. As healthcare providers who support Trisomy 18 people’s right to fair care you can stand up to your peers and educate them with the most current and accurate information. As friends and family of people with Trisomy 18 you can spread the word about those you love and how much their presence in your lives means. As a community we can vote for politicians who value human life born and unborn, who stand up for the rights of the disabled community. And as politicians you can do your job to protect the unalienable rights for everyone including those affected by Trisomy 18 to LIFE, liberty and the pursuit of happiness.