3 things about 3/18, National Trisomy 18 Awareness Day

Credit: Trisomy 18 Foundation

Credit: Trisomy 18 Foundation

Today is National Trisomy 18 Awareness Day, so chosen as “3/18” represents the genetic cause of Trisomy 18, a third copy of the 18th Chromosome. Here are three things about Trisomy 18.

  1. Visit the Trisomy 18 Foundation webpage . Like their page on Facebook. And make a donation today, even one of only $18 or $54 (3 X 18). To learn about Trisomy 18, the place to start is with the experts, those who have lived the experience of having a loved one with Trisomy 18. So visit the Trisomy 18 Foundation website to learn more.
  2. Trisomy 18 (Edwards syndrome) and Trisomy 21 (Down syndrome) share much in common: they’re trisomies, they’re the focus of prenatal testing; and they each have conservative politicians that put the spotlight on them.

    For Down syndrome, it was the 2008 presidential campaign and the selection of Sarah Palin as the Republican Vice-Presidential candidate. Governor Palin’s youngest son, Trig, was born with Down syndrome. For Trisomy 18, it was the 2012 presidential campaign and Republican candidate Senator Rick Santorum, whose youngest daughter, Isabella (“Bella”), was born with Trisomy 18.

    In each campaign, there was a flood of stories about the children and their conditions. And, because the stories were in a presidential campaign, there were also some of the worst outpouring of stupidly cruel comments from idiots on the internet and famous entertainers.

    People of good faith and common sense can actually see past the politics, recognize that regardless of their personal political views these candidates are people, too, and parents. And, some could write some very touching, compassionate columns even though they are stridently on the other side of the political aisle.

    For Trisomy 18, the column I’m thinking of appeared in TIME magazine by Joe Klein. Klein is by far not a conservative or a fan of Santorum’s political positions, but he wrote in appreciation of the Santorum family’s caring for Bella.The article is behind the paywall, but here’s the sections shared by others at the time:

    They [Rick and Karen Santorum] have spent the past three years caring for their daughter Isabella, whose genetic defect, trisomy 18, is an early-death sentence. “Almost 100% of trisomy 18 children are encouraged to be aborted,” Santorum told Schieffer.

    I am haunted by the smiling photos I’ve seen of Isabella with her father and mother, brothers and sisters. No doubt she struggles through many of her days — she nearly died a few weeks ago — but she has also been granted three years of unconditional love and the ability to smile and bring joy. Her tenuous survival has given her family a deeper sense of how precious even the frailest of lives are.

    All right, I can hear you saying, the Santorum family’s course may be admirable, but shouldn’t we have the right to make our own choices?

    Yes, I suppose. But I also worry that we’ve become too averse to personal inconvenience as a society—that we’re less rigorous parents than we should be, that we’ve farmed out our responsibilities, especially for the disabled, to the state—and I’m grateful to Santorum for forcing on me the discomfort of having to think about the moral implications of his daughter’s smile.

  3. Lastly, a good friend shared some questions several years ago that have since haunted me.We were talking about how people with Down syndrome were finally being given an opportunity to flourish. No longer were they shut off in institutions, segregated in schools, and they now receive more often than not the same level of medical care as any other person. The last point was in reference to the Baby Doe case, where a newborn with Down syndrome and a disconnected esophagus, was left to die in a maternity ward on the advice of the attending physician.

    Santorum has told of his family’s experience being sent home with morphine for Bella to ease her pain, only to realize (because his wife has medical training), that the recommended dosage would have killed her. This is still happening, where medical professionals are imposing their views on what lives are worth living to guide parents into accepting euthanizing their children.

    With Trisomy 18, in some instances, parents do decide that the humane choice is to allow nature to take its course and not use extreme measures to prolong their child’s life. But, forgoing measures to allow for natural death and taking active measures to kill are two different moral decisions.

    My friend asked this very important series of questions about Trisomy 18:

    What if Trisomy 18 is in the same place as Trisomy 21 was just 50 years ago?

    What if, instead of the accepted medical view of counseling to not treat, doctors instead gave parents the option to treat their child?

    What if then, just like with Down syndrome, some children with Trisomy 18 would be given a chance at life and we could really see what a child with Trisomy 18’s life could become with proper care and support?

    Like I said, the questions have haunted me since he asked it because we really haven’t seen what a life with Trisomy 18 can fully be like. There just haven’t been enough that received proper care, with parents being supported to raise their children, for us as a society to have an image of what Trisomy 18 actually can be. With Down syndrome, more are starting to see it because more individuals with Down syndrome have received the proper care and support to flourish. But we have yet to see what Trisomy 18 can be like.

So much of human history shows how wrong we are when we pre-judge others because we perceive them as different, or less than a full member of our human family. Children with Trisomy 18 are children first and are just as much a part of our human family as every other child. Will they finally receive the same equal treatment in medicine and social and family supports we all would want should we find ourselves in need of care?

In honor of National Trisomy 18 Awareness Day, visit the Trisomy 18 Foundation and make a donation. They are the ones advocating for these lives that are part of all of our lives, if we choose to let them be.

Comments

  1. Thank you for that lovely, wise and thoughtful post.

  2. If you want to see information on children living life with trisomy 18, please check out the support group, Support for Trisomy 18, 13 and Related disorders (SOFT), at http://www.trisomy.org . There you will find family stories and beautiful photos of many children and even some adults with trisomy 18 as well as professional articles and helpful information for families. Please look through the website as I think you will like what you find. SOFT is has been helping families for 3 decades and its medical director Dr John C Carey was the 2013 recipient of Global Genes Caregiver of Hope.

  3. Mark, few children with full Trisomy 18 live long but some, 8-10%, do. Our full trisomy 18 daughter lived over 19 years as a happy child and we know others in their 30’s. Medical intervention and treatment, not shunting them aside, is what helps them. Please check out the 34-year-old non-profit SOFT, at http://www.trisomy.org. SOFT has over a thousand current members, holds well-attended annual conferences, supports research and provides a range of information and services to families.

  4. solange lariza silva quevedo says:

    yo tengo una bebita con trisomia 18 y e sentido mucha discriminacion asia ella es hermosa y la disfruto muxo a ca en mi pais no hay muxa informacion sobre este sindrome ,ellos son niños hermosos qe hay qe darle su lugar como a todos no discriminarlos como lo asen espero qe eso canbie es mui doloroso qe te discriminen a tu hijo bueno qe esten bien y me da gusto qe en su pais tengan gente qe no discriminen a alos niños con trisomia 18

  5. Mark, you were right the first time – that was a Spanish idiom and your response was quite appropriate. So no worries.

  6. Thanks for thinking of our trisomy 13/18 community Mark.
    This past year we launched the International Trisomy 13/18 Alliance. Our goal is to empower parents to advocate and raise awareness of the latest researchers with providers. There is far too much misinformation out there and not enough research.
    http://www.internationaltrisomyalliance.com

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  1. […] Did you know that almost 100% of Trisomy 18 babies are encouraged to be aborted? Source and source […]

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