Thursday, August 4, 2016

Children with Trisomy 13/18 are not incompatible with life.

Alex Schadenberg
International Chair - Euthanasia Prevention Coalition

For many years, children born with Trisomy 13 or 18 were labeled as having a lethal anomoly. The parents of children with Trisomy 13/18 were often refused medical treatment or urged to refuse treatment based on a belief that the child would die anyway.

In the past few years new research indicates that many children with Trisomy 13/18 can survive and some of them are doing well. This information has resulted in some parents wanting medical treatment for their children resulting in a few physicians becoming treatment experts for these children.

Dr. John D. Lantos wrote an article that was published in the Journal of the American Medical Association (JAMA) on July 26: Trisomy 13 and 18 - Treatment Decisions in a Stable Gray Zone.

In the article Lantos explains that 30 years ago pediatric residents were taught that trisomy 13/18 were lethal congenital anomalies. He wrote:

Parents were told that these conditions were incompatible with life. There was a tacit consensus that life-sustaining treatment was not medically indicated. Clinical experience usually was consistent with this self-fulfilling prophecy. 
Occasionally, though, some infants with these conditions did survive. The children were invariably institutionalized and described as severely impaired. These case reports were considered as the rare exceptions that proved the rule.
Lantos then explains that everything changed in the age of social media. 
In the age of social media, however, everything changed. Parents share stories and videos, showing their happy 4 and 5-year-old children with these conditions. Survival, it turns out, is not as rare as once thought. Children who were not institutionalized looked happy, cared for, and loved. It became increasingly awkward to describe these conditions as incompatible with life to parents who had ready access to information showing that it was not true.
The story of Bella, the daughter of Senator Rick Santorum, became a well known story about the survival of a child with Trisomy 13. 

Brandon Bosma who is 18-years-old speaks about living with Trisomy 18.

In his article, Dr Lantos then outlines the results of a new study by Dr Katherine Nelson titled: Survival and Surgical Interventions for Children with Trisomy 13 and 18 also published on July 26 in JAMA. Lantos states:
The study by Nelson and colleagues in this issue of JAMA describes survival and use of surgery in a large population-based cohort of children with trisomy 13 and 18 over a long period (21 years,until 2013) in Ontario, Canada. Of 174 children with trisomy 13, the median survival was 12.5 days; of 254 children with trisomy 18, median survival was 9 days. However, 12.9% of children with trisomy 13 and 9.8% with trisomy 18 survived to 10 years. Of children with trisomy 13, 23.6% underwent surgery with a 1-year survival after the first surgery of 70.7%, and of children with trisomy 18, 13.8% underwent surgery with a 1-year survival after the first surgery of 68.6%. The authors did not comment on how many deaths followed decisions to withhold or withdraw life-sustaining treatment. 
In the authors’ review of population-based studies, it appears that survival rates are increasing for infants with trisomy 13 and 18. Thirty years ago, no reports indicated that these infants survived until age 1 year. Over the next few decades, 1-year survival rates increased to 5% to 10%. In the study by Nelson and et al, 19.8% of infants with trisomy 13 and 12.6% of infants with trisomy 18 lived past their first birthday. As with the study by Nelson et al, no prior studies report the percentage of deaths that follow decisions to withhold life-sustaining treatment but, given the prevailing mindset, the number is probably high. Thus, reported rates of survival must be low estimates of the true possibility of survival. The increased survival over time is almost certainly a result of decisions to provide more treatment.
It is important to state that most Trisomy 13/18 children are still being denied medical treatment. There is no way to know how many of those children would have survived or thrived, like Brandon and Lilliana, had treatment been provided.

Dr Lantos offers insight into medical decisions based on "quality of life."
The concept of quality of life is too vague and subjective to be helpful as a criterion for deciding about the appropriateness of treatment. No one can know with certainty what any infant is thinking, feeling, or experiencing, but what is observed can be interpreted. Children with trisomy13 and 18 smile and laugh. They are not in pain. They give and receive love. These factors suggest that their subjective quality of life is not so poor that life-prolonging treatment should not be offered.
Dr Lantos concludes that parents should make the decision to provide or withhold treatment, but that accurate definitions needs to be established.

I personally thank Barbara Farlow for being an advocate for children with Trisomy 13/18. 

I believe that children with disabilities, who are not actually dying, should be given a chance to live. The human family have variable characteristics, abilities and disabilities. I consider all human beings as equally deserving of care and support otherwise society becomes locked into a philosophy that some lives are better off dead, which leads to ending of life decisions based on discrimination and fear.

1 comment:

Trisomy 13 Life with Natalia ~ Transformed by Love said...

SOFT Support Organiazaiton for Trisomy 18, 13 and Related Disorders, supporting professionals and families for over 37 years.
SOFT is the most complete source of medical and family resources for trisomy conditions.

There are many trisomy 13 children living with full, partial and mosaic trisomy 13. You can follow them on
The url is currently rolling to a public facebook group, soon the site will be relaunched with a new format and design.

ThereseAnn, Mom to Natalia living with full trisomy 13, almost 16yrs. old.