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A professor of Neonatal-Perinatal Medicine who has worked with hundreds of families where baby had a life-limiting condition, has urged politicians and medical professionals to ‘rise above their prejudices and listen to families’ when considering medical care and interventions for babies diagnosed with trisomy 13 and 18.

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LISTEN to his important interview here:

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Dr. Martin McCaffrey told the Pat Kenny show on Newstalk that the medical literature showed that these babies were living longer than had been previously expected, and that evidence from major studies showed that as many as 20% of children with Trisomy 13 and 18 could live up to a year, with up to 10% reaching a life of 10 years if they were supported and beneficial interventions given.
 
He said that he was taught during medical training that all these babies die very soon, but in 2009 he met parents of babies who had trisomy and learned that many of them had survived, and this had led to an epiphany.
 
Dr McCaffrey said that babies with trisomy did not have a life of suffering as some people imagined, and that our own prejudices regarding severe developmental delay often coloured how we valued babies with chromosomal disorders.

 
He noted that these opinions were in stark contrast to the experiences of families, which were overwhelmingly positive, and who reported that their children were happy and had enriched their families.
 
Referring to an article by Dr John Lantos, one of the world’s premier medical ethicists, he noted that Dr Lantos had said it was ‘untenable’ that we described Trisomy 13 and 18 as ‘fatal foetal anomalies’ since they conditions were not uniformly fatal.
 
Dr Lantos’ article entitled “Trisomy 13 and 18—Treatment Decisions in a Stable Gray Zone” noted that "the increased survival over time is almost certainly a result of decisions to provide more treatment." Those who survive do so because doctors decide to offer treatment and allow families as much time as possible with their children, rather than simply give up. “Children with trisomy 13 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," he wrote.
 
Asked about abortion for babies with anencephaly, Dr McCaffrey said that these babies were not brain-dead as many might imagine and referred to a study from Duke University which showed that depression and despair scores were much higher for women who had an abortion after a diagnoses of anencephaly.  
 
A listener to the Pat Kenny show texted in to say: “My sister was born 23 years ago with Trisomy 14. This was a very grave diagnosis and she was quite sick, it was touch and go for the first year of her life. But now she’s a beautiful, fun-loving, young at heart, young woman, with quite minimal health needs, and gives us so much joy. This a reality we could never have imagined when she was born.”
 
Dr McCaffrey also spoke in Stormont and at a perinatal care conference for medical professionals in Belfast last week regarding new insights into these severe conditions.  He urged society to learn from the mistakes medics made in the past when dealing with children with Down Syndrome when now treating patients with other chromosomal disorders.  
 
He noted that in the past, children with Down Syndrome 9 (or Trisomy 21) and their families were given little hope and little care from doctors. Medical intervention was discouraged and these children were often institutionalized as it was assumed that they had a very low quality of life.  Thankfully attitudes have changed regarding children and adults with Down Syndrome.  It is recognized that, despite their condition, they can lead happy, fulfilled lives and bring enormous joy to their families and friends.  Doctors now work to ensure that those with Down Syndrome have access to care which will enable them to live as long as possible.

However, Dr. McCaffrey noted, this is sadly not the case for those with other chromosomal anomalies. Dr. McCaffrey asserted that the treatment (or lack of treatment) those children receive is often the result of the personal prejudices of their doctor. "Perhaps the best interpretation is that many providers accept that a life, as long as 1 year, is possible with Trisomy 18, but only a minority of providers see value in such a life," Dr. McCaffrey writes in the American Journal of Medical Genetics.
 
Neither Dr. McCaffrey nor the parents of these children assume that doctors can perform miracles and reverse life conditions in children.  However they do insist that more can be done for these children to provide them with the best care possible and give them with more time with their families.
 
Tracey Harkin, of the support group Every Life Counts, stated, "We're not being unrealistic or expecting miracles, just asking that every baby is examined on a case-by-case basis. We really hope that politicians and medics will listen to the evidence and give our children the same chance as any other child. "
 
LISTEN to his important interview here: