The following letter appeared in the Irish Times on Monday Oct. 9th, re ‘The Eighth Amendment and Life-Limiting Conditions’:
· Letter: The Eighth Amendment and life-limiting conditions
Sir, – I write in response to views expressed by Amy Walsh’s letter on September 29th referencing Breda O’Brien’s article “When ‘fatal foetal’ anomalies are not so fatal” (Opinion & Analysis, September 23rd).
I offer my deepest condolences to Ms Walsh over the loss of her precious daughter but also need to correct her commentary. The care of infants with life-limiting disorders, and their families, is an integral part of neonatal medicine. In addition to being a neonatologist, I also offer medical support to families of children with life-limiting conditions. My commitment is to truth and the best possible care for my patients and their families.
Ms Walsh labels me a “lobbyist”. I am a servant, not a lobbyist, and the literature cited to support my positions is from a variety of authors published in peer-reviewed journals.
Ms Walsh claims I argue that “prenatal testing somehow adversely affects outcomes for babies with these (foetal) conditions” and these arguments are “not only untruthful but harmful”. There is literature on the impact of prenatal diagnosis on subsequent care for infants with life-limiting conditions. My comments are based on these reports. Janvier et al(American Journal of Medical Genetics Part C: Seminars in Medical Genetics 2016) describe the differences in palliative care for infants with a prenatal versus a postnatal diagnosis of trisomy 13 or 18. In all cases physicians recommended only comfort care. In cases of prenatal diagnoses 61 per cent of parents reported they were pressured to terminate the pregnancy. This study reaches two key conclusions. First, the single most important factor related to death of a trisomy baby before going home or before one year of age was a prenatal diagnosis. Second, Janvier et al state, given differences in care offered, “It seems palliative care for children with prenatal diagnosis is directed to a goal of having as short a survival as possible, with medications being prepared even before delivery (Harlos et al 2013 Journal of Pain and Symptom Management). Giving the child an optimal death seemed to be the goal of palliative care after a prenatal diagnosis of trisomy 13 or 18.” So yes, prenatal testing can, via termination pressure and a minimalist palliative care approach, adversely affect the baby.
I fully agree with Ms Walsh that triploidy, and other genetic conditions including trisomy 13 and 18, absolutely have a spectrum of expression.
I do not offer false hope for these conditions but plead for accurate reporting of that spectrum of possible outcomes by healthcare providers.
This variable expression is why these conditions should not be called “fatal”.
Many children with these conditions will not be born alive, but a large number will and they will have variable lengths of life. By definition then these are life-limiting conditions.
Triploidy has a high stillborn rate but some babies are born alive with full triploidy and have lived for months. Into the 1980s being born with Down syndrome and certain cardiac or gastrointestinal anomalies was lethal given the unwillingness of physicians to offer necessary surgical procedures. Not today. Increasing numbers of publications now demonstrate long-term survivals for children with trisomy 13 and 18 of years, despite ongoing descriptions of this life-limiting condition as “lethal”. Infants with anencephaly are missing the cerebral cortex. They have a spectrum of survival as well, with the majority being born alive, but they have as a group perhaps the shortest lives, minutes to days after birth. Do even the shortest of these lives, regularly reported as a blessing by their families, not count as a life? The second question that physicians must answer, in conjunction with families, is what benefit is to be gained by ending the life of these infants in the womb? It surely does not advantage the baby and it deprives the family of the possibility of meeting their child alive, but does it in some way help the mother? Cope et al (Prenatal Diagnosis 2015), surveyed mothers of anencephalic infants who continued their pregnancies and compared them to those who terminated. The results demonstrated that women who terminated their pregnancy reported significantly more despair, avoidance and depression than women who continued the pregnancy.
Physicians caring for mothers and their infants with a life-limiting condition have a duty to put aside personal prejudice to develop care plans based on best evidence with a laser-like focus on the best interests of the mother and baby. In considering the future of the Eighth Amendment, the Oireachtas Committee and the people of Ireland have the opportunity to learn from the tragic errors of other nations. As misguided as it is to consider an expansion of abortion services on the false narrative of “fatal foetal anomalies”, the reality is that there will be an insatiable call for abortion services to continue to expand. I would welcome the opportunity to speak further with Ms Walsh and the Oireachtas Committee in the comprehensive discussions which should occur in considering the future of the Eighth Amendment. – Yours, etc,
MARTIN J McCAFFREY,
MD, Capt USN (Ret),
Professor of Paediatrics,
Division of Neonatal
Department of Paediatrics,
University of North Carolina,
School of Medicine,