Preterm Babies are Human Beings Too

The Canadian Medical Association Journal has just published a Commentary by 2 neonatologists from the USA. Batton D, Batton B: Advocating for equality for preterm infants. Canadian Medical Association Journal 2013.

The commentary is in response to the CPS recent statement, produced by the fetus and newborn committee ‘Counselling and management for anticipated extremely preterm birth, Pediatr Child Health 2012:17; 443-6’. (The new document is behind a paywall, if you can’t find another way of getting a copy, let me know, I might be able to help.)

The new commentary is a brief critique of the statement, which, to me, hits all the right buttons; the uncertainty of gestational age assessment, the unreliability of data from centers that practice selective treatment, the impossibility of predicting outcomes before birth, and the fact that the decisions that are being made would be completely unacceptable for any other patient with similar predicted outcomes.

One thing that continues to disturb me is that way that neonatologists have often advocated against our patients. We have promoted standards that no other group would accept, and accepted enormous variations in practice that would be heavily criticized in other fields.

It is about time that we started to advocate for our patients, for standards of care that recognize that these babies deserve appropriate medical care, and have rights as human beings once they are born.  I don’t think that life sustaining interventions should always be provided to all preterm babies, but I don’t think that for older children or adults either. We should be pushing for all preterm babies to be given the same benefits, the same opportunities, and the same considerations of their best interest as other patients. We have instead accepted, and even ourselves promoted, arbitrary and non-evidence based limits to be placed on life-sustaining interventions.

The Key Points of the Battons’ commentary are :

• The decision to provide active intervention to extremely preterm infants at the border of viability is difficult but should not be discriminatory.

• Current methods of estimating gestational age are not sufficiently precise for this to be the sole basis for decision-making.

• The error of a self-fulfilling prophecy inherent in withholding active intervention in the delivery room because it is assumed to be futile should be avoided.

• Reported neurodevelopmental disability rates in populations of surviving infants are not sufficient criteria for withholding active intervention in the delivery room.

• Providing antenatal steroids and active intervention initially and then re-evaluating the appropriateness of such intervention with the parents thereafter should be the default approach to care when the infant’s best interests are unclear.

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research and tagged , , . Bookmark the permalink.

35 Responses to Preterm Babies are Human Beings Too

  1. Karine C says:

    At the entrance of my daughter’s NICU :

    ” A person is a person, no matter how small” -Dr Seuss

    That said and still says it all about our team’s approach. Still grateful for it.

  2. mommypeace says:

    Thank you for advocating for these tiny, awesome humans.

  3. Thank you for giving the preterms hope including the parents.

  4. The CPS statement has been a point of discussion for me personally but also for me as the President of Canadian Premature Babies Foundation-Fondation pour Bébés Prématurés Canadiens. I am pleased to see D. Batton, B. Batton’s published article. It does hit the nail on the head. Your commentary does as well Keith.
    There just are no black and white answers when it comes to extremely preterm birth, whether anticipated or not. There are many things to consider: babies weight, steroids given to the mother prenatally, approximate gestational age etc. Making assumptions about “developmental outcomes” in the delivery room is not appropriate. Physicians are not clairvoyants, they do not know about babies’ outcomes at birth.
    Families think differently from the “medical community”. For families, the decisions are life-long ones. Many families I know, want their babies regardless of “issues of development”. These decisions need to be made individually, with the family. Families need unbiased information and they need time. Why not resucitate when all aspects are considered and let the baby speak for him/herself? Give the family the time they deserve for decisions that will likely of some of the most difficult in their lives.

    CPBF has written a letter to the CPS about this position statement. I will share it in the next blog entry. Katharina Staub, mother of preterm twins born at 27 weeks and 2 days (ha, we did know our gestation..unlike most) in 2008.

  5. John E Yount, MD says:

    Thank you Keith — a thoughtful and balanced assessment

    I believe each living infant at birth should have a birth certificate and death certificate even if “non-viable”.
    The attendant notes should include photographs, full exam with Wt, Ht OFC vitals as measurable; and the death note should include the social and grieving support plan for any patients placed in immediate hospice status at birth.

    The parents and subsequent relatives deserve the right to dependent status for IRS, and the documentation of pattern of development.

  6. John E. Yount, MD says:

    Keith Barrington,MD–

    In further expanding on my commitment to the full recognition of personhood
    for the non-viable I have carefully established hospice status for each of the following infants:

    1. At emergency C-Section for 32 week
    Gestation twins — one with
    Anencephaly was put on Hospice
    near mother in recovery area while
    Sib was admitted to NICU; Nurses &
    I provided appropriate clothing, grief
    counseling, baptism, and follow-up
    support was arranged at same time
    sib received standard NICU admit.

    2. 280 GM 22 week female with
    gelatinous skin and heart beat;
    admitted to mother’s room,
    swaddled and attended — birth
    and death certificates completed;
    infant named (Ruth) by parents and
    no baptism elected– but offered.
    Heart beat for three hours

    3. 18 Trisomy female Dx by amnio at
    <20 weeks -parents Roman Catholic
    and chose not to terminate pregnancy.
    Prenatal Hospice Care plan with 12 care decisions made in prenatal POLST reviewed by local Medical Ethics Committee and also submitted and approved as unique case by National Catholic Health Care Association.
    1. NO CPR or Oxygen
    2. No fetal monitor
    3. No C-section except for
    maternal indications
    4. No injection medication
    5. Airway clearance by suction
    bulb per expressed need
    6. Formula feeding by nipple
    Exclusively– as deemed
    appropriate by caregiver for
    Expressed need
    7. No antibiotics
    8. No monitoring except surface
    temperature
    9. Swaddling per apparent need
    10. No emergency interventions
    11. Baptism at birth
    12. Acetominophen orally as only
    Med. Liquid vitamins given

    Infant lived until 9 months old;
    after rooming in went home at
    three days. Hospice nurses
    provided 6-8 hour/week respite
    care. I was invited to
    funeral in home– will share
    private comments regarding
    family if you contact me

  7. Barb Farlow says:

    Thank you Keith for highlighting this excellent article by Batton and Batton. They have succinctly hit the nail on the head regarding the discriminatory preemie guidelines.

    What concerns me most is that it is known that some infants born before 23 weeks do survive. However, the CPS committee considered the cost and risk of disability and made a judgement, reflective of THEIR values and decided that all of these newborns should be denied a chance and be left to die.

    It seems the committee’s aversion to disabled survivors is so great that they have created a position statement they know will result in the death of children who might have survived without disability.

    I wonder, for which class of children will the next line be drawn? There are many genetic conditions for which there is an outcome of certain disability and a life time of medical and social costs. Does the committee wish to withhold medical care from neonates with these conditions too?

    When newborn testing reveals a gene associated with a risk of disability will the Committee make a decision about whether the risk warrants withholding care from all of these children too?

    In my opinion, the committee has taken a very dangerous step in the wrong direction. On behalf of all vulnerable infants and their families, thank you for your advocacy Keith.

  8. As a parent, I would be horrified to go to any hospital where doctors would make no attempt at helping my child without it being specifically based on my child’s condition at that time. No set of “guidelines” can substitute for evaluating a case in person and making a determination of care and intervention that is appropriate in that situation. Further, a parents wishes must be taken into consideration AT LEAST as much, if not more so, than a blind set of criteria, which does not allow for exemptions based on obvious factors such as birth weight, prognosis, and patient’s response to treatment. To deny treatment initially based on this set of factors is cruel and inhumane. The world will be watching as Canada shows how much the “business” of health care is factoring into how much doctors here do their jobs to heal.

  9. jpstevens79 says:

    I too think it is disgusting that a baby, prem or disabled, should be valued as an expense. Thank you for speeding out for these children and their parents

  10. Thank you from a trisomy 18 mom and physician from Norway, for highlighting the article by Batton and Batton. In my country there is also a tendency to discriminate against the extremely preterm babies on grounds of possible neurodevelopment disabilities. Several neonatologists say to the media that due to the increased risk of disabilities, saving the youngest is wrong. But that is nothing but blatant discrimination, and should not be for the neonatologists to decide.
    As a trisomy mom, I have experienced the same discrimination against my baby, and I do appreciate your fight for the most vulnerable patients and their families.
    Thank you!

  11. Amilo Williams says:

    Thank God there are Doctors that are advocates like you. Every child whether preemie, or having a genetic condition being label “incompatible with life” are human beings, they were sent to earth for a purpose… So we should fight for them to at least have a chance for life and let God be the determining factor of whether the baby will stay on earth or become an extraordinary angel pure from all the sins of this world… True talk…

  12. J Childress says:

    I am the parent of a child with trisomy 18 who lived for one year. My daughter did not have a prenatal diagnosis and so she was rescusitated and given support immediately after birth without discrimination. I know this may not have been the case with a prenatal diagnosis. After the diagnosis we were given no options and no hope. We took her home under hospice care. She began to feed orally and grow. We loved our time with her and are very thankful for it.
    I think that babies born in such vulnerable conditions (whether micro-preemie or a genetic/chromosomal condition) require case by case consideration. This is an instance where general/consensus guidelines are not beneficial to the patient. Under such guidelines I likely would not have had a year with my daughter. Viewing her as a baby instead of as a trisomy 18 baby afforded her the chance to live and to exceed expectations, which she did.
    Thank you for highlighting this issue. Thank you to Dr. D Batton and Dr. B Batton for your supportive approach to caring for these vulnerable babies and for recognizing their human rights.

  13. John Yount says:

    To be clear regarding the decision for no CPR at birth that my family elected and the degree of “control” that implies. Trisomy 18 is the second most common major Trisomy after Down’s Syndrome. 2/3 of the fetuses so conceived die before birth, principally of spontaneous unknown causes. Of the remaining one third most do not require CPR at birth to have a short life with over 95% dying before a year of age. The developmental limitations are severe with no documented fully manifest Trisomy 18 infant developing recognition of self or care givers. Some infants with Trisomy 18 mosaicism have manifest some very limited degree of personality development. The oldest surviving persons with the condition have reached the second decade of life while tube fed, unresponsively bedridden and recurrently treated for infections.

    It was not from a lack of love and parental respect for their child that the young couple made the 12 choices in our POLST established before birth. They had no insurance coverage for home care, and could not afford child care. They elected to provide the nine months of devoted and life-sustaining care for her and her 18 month old normal brother entirely on their own. The parents saw each other 1 1/2 hours a day while each worked outside the home as well. They did not anticipate providing CPR at the time of her expected death, just as you did not do so for your child in hospice care. Establishing Hospice Care before birth is no less loving and carefully considered a choice than it is at a later time. It is unfair to imply any judgment of that choice, or to suggest it is going to deny an “opportunity.” Each family and affected person is a unique occurrence that needs careful, honest and supportive counseling.

    • Dr. Yount,
      I will begin this comment by expressing my belief that you have the best of intentions for your patients. I also support decisions made by fully informed parents. As you note the parents were Catholic, the Principle of Proportionate and Disproportionate Means would apply. Some decisions are personal and difficult and nobody should judge others.

      However, with respect, I must disagree with your description of trisomy 18. I support my position with evidence and experience.

      In 2004, a paper entitled Lethal language, Lethal Decisions challenged the description of lethality for many conditions on the basis that treatment existed that could prolong life but it was withheld. The authors (Koogler, Ross and Wilfond) suggested that doctors led parents to believe that nothing could be done to help their child and thus parents made a decision for comfort care when all along, some doctors were in fact imposing a quality of life judgement and withholding an offer of treatment. These actions may very well have depressed the survival rate of conditions such as Trisomy 13 and 18. Many have suggested that a “self-fulfilling prophecy” applied to these children.

      The internet had a dynamic impact on trisomy 13 and 18. Parents created websites and support groups and for the first time, newly diagnosed parents found that some children did survive and benefit from interventions and they had hope for their own child.

      Increasing parental requests for treatment caused ethical conflicts and in the past 5 years, a number of papers have been published by parents and providers alike about this conflict.

      Two incredibly wise and thoughtful physician/ethicists- Dr. Annie Janvier (Montreal) and Dr. Ben Wilfond (Seattle) realized that conflicts might be diminished if the parental experience of having a child with trisomy 13 and 18 was made known to the medical community.

      We published our first paper in Pediatrics last year. The sample size was incredibly large for relatively rare conditions- 272 parents who had live-born children with trisomy 13 or 18 answered the survey. The article is open access-http://pediatrics.aappublications.org/content/130/2/293.long I must inform you emphatically that almost all the parents would disagree with your description of a living child with trisomy 18.

      You wrote: “The developmental limitations are severe with no documented fully manifest Trisomy 18 infant developing recognition of self or care givers.” In contrast, parents almost unanimously told us that their children were happy, that they had their own way of communicating with them and that they enriched their lives. Parents reported that their child had a positive influence on siblings.

      Children with full trisomy 13 and 18 do learn and progress, albeit very slowly. Some learn to walk unsupported. Parents are thrilled with every milestone.

      Furthermore, we found that all children and their families are unique. Some parents chose comfort care and some interventions with a result that some children survived for years on comfort care and some children died young despite interventions. Few parents had regrets and almost all reflected on their experience after their child passed away as being positive. They admitted to financial challenges and the effort required to care for a child but they were pleased with their choice all the same.

      Family pictures, stories and videos can be found at the Support Organization for Trisomy (SOFT) http://trisomy.org/

      I conclude by echoing your words, Dr. Yount and I completely agree, “Each family and affected person is a unique occurrence that needs careful, honest and supportive counseling.” This applies to all vulnerable infants. I will add that quality of life is highly subjective and physicians must be very cautious not to impose their views, especially if their views are based on assumption or misinformation.

    • Susan Budd says:

      Wow! This is an incredibly biased and uneducated comment: “The developmental limitations are severe with no documented fully manifest Trisomy 18 infant developing recognition of self or care givers.” I imagine you have never been to a SOFT conference and experienced these children first hand. Experience with one or two kids does NOT count as acceptable scientific evidence for all trisomy kids.
      My full trisomy 18 daughter is 4 1/2. Not only does she recognize each if us, she gets EXCITED when she sees certain people she also just recently started expressing stranger anxiety and does not do well around new people until she knows them. She she sees her one nurse, or her oldest brother, she physically bounces up and down and says “hi” to them. She rubs are cheek adoringly, snuggles into my shoulder for a safe, deep hug, and yells out for someone when she is left in a room by herself. She is most definitely aware of who she is and those around her. And she is not an anomaly. I see social skills as one of the stronger assets in many of these kids…and I bet I’ve met more of then in person than you have! After the many kids I’ve met in person (probably over 100 kids I got to interact with), I would consider my daughter kind of “average” for T18. And she has most excellent social skills and communicates amazingly well for being nonverbal. She can use ACC devices too for making decisions and communicating to us.

      There is at least one paper one actual communication skills – Communication ability in persons with Trisomy 18 and Trisomy 13. AAC Augmentative and Alternative Communication. By Braddock, B., McDaniel, J., Spragge, S., Loncke, F., Braddock, S.R., & Carey, J.C. (2012).
      There are some medical doctors that have had the experience of meeting hundreds of different trisomy kids, one being Dr John Carey (neonatologist) of Univ of Utah. I bet he would greatly disagree with your statement as well as it is not backed up by experiential data.

    • Rebekah says:

      My son is 3 1/2 years and has full Trisomy 18. He is without a doubt, the happiest kid I know (and he’s got several siblings, so I have a basis for that comment). He not only knows and interacts with people, he distinguishes between those he likes and those he loves. A few months ago, a favorite nurse went on vacation for a week. When she returned, he turned his back on her for an hour, and then decided to play and interact with her all night. He is a little monkey with an impish grin that delights all around him. He also gets “cause and effect.” If you stop rubbing his back or something else he wants, he’ll wiggle and move until you start again. If you don’t start again, he’ll move more vigorously and start patting and then hitting with his hand.. Stopping again will produce the same result.

      This all aside, he has been an enormous blessing in our home. He has taught us to interact more closely, love more deeply and cherish each other more dearly since his birth. His affect on his family and those around him will carry through the generations, long after he departs this earth.

    • rethinkingpatientsafety says:

      One solid counterexample to a generalization should tell us we are thinking incorrectly. Pubmed tells us there are many more. According to the articles listed in Pubmed, there are adults known to have Trisomy 18, one with normal intelligence. http://www.ncbi.nlm.nih.gov/pubmed/12833422 Keep in mind that we have not tested the vast majority of us walking around for genetic conditions. The truth is, we don’t know much about these conditions.

      Before we arrive at generalizations about whom to euthanize too quickly, we might want to remember how unlikely it seemed in 1960 that children from Liverpool, England, might have a future in pop music. Then came the Beatles.

      I was surprised by the results of my search. http://www.ncbi.nlm.nih.gov/pubmed/?term=16575893+16528740+12833422+12376944+11952553

      Those who claim that the condition is incompatible with survival either do or do not know of the reported cases. If they do not know, we must question if they are informed enough to be making policy. If they do know of the reported cases but fail to mention them, then a more troubling set of questions arises.

  14. caroline says:

    I am glad to hear that there is discussion around these decisions without judgement. I would applaud those medical professionals who challenge myopic thinking. I would like to raise the issue of trisomy 18 statistics. The 5% survival quoted is due to be updated to a significantly higher %age. I believe the publication date in UK is due early next year. Also, my full T18 daughter is 2.2 and she both recognises herself in mirror, photo and video context. She becomes excited when family members visit, and she is beginning to show signs of shyness towards those unfamiliar to her.

  15. Please look at my daughters blog listed above. She has full Trisomy18 and is 8 1/2 yrs old. She is so full of life and adores and knows each one of her family members. Her name is Annabel Grace. annabelgrace.blogspot.com

  16. Marta McClanahan says:

    I’m the mother of a 12 year old boy who has full t18 and he sure knows his family. He signs mom and dad and will say momma. He plays with toys and uses interactive switches and will shake his head yes and no. Kayden even goes on rides. He sure is not bed ridden and is very social in his own way and happy. He is the light of our family,he has taught us so much about patience,faith and true love. Kayden understands way more than he can communicate. My other two boys are more compassionate and will better men for having kayden as their brother. You can see him over the years at http://www.youtube.com/memyma also if any families of a trisomy child reads this you can join us with many other families at our Facebook support page https://www.facebook.com/groups/trisomyfamilies/

  17. susie kane says:

    I am the mother of a full t18 son of 5months. Yes, he is developmentally delayed but he is progressing. He smiles and certainly recognises me as his mother. He is trying to roll over and has great hand to eye coordination – he can pull off his oxygen tube at first try! I am not a doctor but I am a mother of 7 children and think that should qualify me as an expert of some description! Trisomy 18 is a horrible thing to happen to a child but they CAN go on to lead happy lives albeit different to the majority of the population. Any attempt to discriminate against their right to life, or that of any other disabled group, is wrong. I also believe witholding care from a premature baby because it “might” have disabilities is morally reprehensible.

  18. I continue to be upset and very concerned by the comments made by some professionals regarding the possibilities for survival/ quality of life for babies born with Trisomy 18. I received no pre-natal diagnosis for my full T18 daughter back in 1992 and was therefore not given any warning. I will be eternally grateful for that fact as I would must likely have bowed to medical opinion and terminated. Almost 22 years later my beautiful, vibrant daughter is still alive. Yes she has full Trisomy 18 but she in no way fits the description posted here by Dr Yount.
    There is no question that her development over the years has been delayed but Dr Yount’s comment that there is no “documented fully manifest Trisomy 18 infant developing recognition of self or care givers” is completely incorrect. My daughter along with other full T18s we have the privilege to know, in their teens, 20s and even their 30s are very self aware and whilst non verbal, have, as a result of speech and language therapy developed their own communication skills to interact with care givers, family members, peers etc. My daughter has the most expressive eyes and eyebrows! Her contempt for me when I am treating her as less than a young woman is so obvious. Her intent to obtain what she wants is a very developed skill. She loves nothing more than to be surrounded by people, particularly men, holding court and communicating who is her favourite today. If she has spent time away from me she clearly attempts to guilt trip me for that break by ignoring me for the first hour she is returned to me and then when I have gone well beyond the call of duty to praise her and make a huge fuss of her, she turns to me pinches me and smirks as if to say ” only joking mum but I like to give you a hard time!”
    Dr Yount you also state that “The oldest surviving persons with the condition have reached the second decade of life while tube fed, unresponsively bedridden and recurrently treated for infections” Again, this is simply untrue. I do not know a full T18 child or young person who is bedridden. In fact I know of some children who are almost walking unaided. They go out to school, college, swimming, rock concerts, they travel around the world. My daughter has even been to the top of one of the UK’s highest mountains assisted by the British Army. Yes, a high proportion are tube fed but is that such a big deal? Initially I was horrified that my daughter may not be able to eat but almost 22 years later her gastrostomy has allowed us to build her up, keep her healthy and lead a full and active family life. T18 children can be susceptible to infection but if they are treated as an individual rather than as a diagnosis then they have every chance of surviving those infections and returning to full health. Until my daughter developed swine flu in Jan 2011 she had not had a hospitalisation for 13 years, only suffering from the normal winter bugs that the rest of the family also suffered.
    The key word in all of this is “documented” – that is the problem. The Teaching Hospitals need desperately to come up to speed on the literature that is available on T18 so that medical students can learn about the condition, rather than be told “T18 is incompatible with life” The information that is shared via social media between families with surviving T18 children should be accumulated, edited and distributed amongst the medical professionals responsible for teaching and amongst the ethics committees within our hospitals –
    No medical professional should have the right to advise parents using out of date information neither should they play God by insinuation.

  19. When our daughter was born almost five years ago we thankfully did not fully know what her genetic diagnosis was and that lack of knowledge was her life saver because had we pursued amneocentis when she developed choroid plexus cysts we would have likely been counseled to terminate her life, and I choose that turn of phrase deliberately because it would have been her life not simply my pregnancy that would have been ended, and we would have been much the poorer for not having the blessing of knowing this extraordinary little girl sitting next to me. Has our life been easy these past few years? Nope. Has yours? Please name a single person who does not struggle at some point in their life and I will say that person has not truly lived because a life worth living is hard, messy, good, bad, up, down and if you are lucky full of love. I would be less than honest if I said this would have been the path I would have chosen for my child, but this is the path we are on and I know beyond a shadow of a doubt that my daughter knows who I am as well as every single person in her world (and there are many) whom she loves and who love her. My daughter may not chatter nonstop like many four year olds but when she does speak that makes it all the sweeter because I know what it takes for her brain to send that message to allow her to speak and believe me when you wait four years to hear your child say “night night” you darn well learn to appreciate the effort and bask in that moment of joy. Why do we deem these children unworthy of care? I understand the cost of their care is high but I would argue that if they were given the life saving surgeries like my daughter had (EA/TEF repair at 12 hours old, open heart surgery at 5 weeks to close 4 holes in her heart) they might be able to grow and thrive as she has. Yes she has a G tube, so what? Yes she has epilepsy and we are coping with that as best we can thanks to her wonderful doctor at Boston Children’s Hospital. Open your heart and mind to these children, I guarantee you will not be able to resist them.

  20. Ann Barnes says:

    Dr Yount’s inaccurate description of trisomy 18 gives no hope, and this is the central concern the trisomy community has about palliative care. How can a perinatal palliative care physician provide balanced information when his opinion is so negative about this disorder? Expectant parents cannot make informed decisions about continuing a pregnancy or decisions about care of their newborn without up-to-date, comprehensive information. Parents of the newly diagnosed are fearful, vulnerable and greatly influenced by the advice of their physicians. A parent must live with the outcome and unbalanced information is a disservice that becomes regret if they learn they were not fully informed.
    Part of the job of health care providers is to continue their education so as to remain current in their specialty. An extensive bibliography of articles from medical publications about trisomy 18 and 13 can be accessed at http://www.trisomy.org > Professional. This site also contains numerous stories, photos and helpful information for parents, expectant parents and parents who have experienced loss.
    The oldest with trisomy18 in the SOFT organization are in their 3rd decade and each has their own unique personality, loves attention and knows their family/caregiver. They are content, mostly happy and their families love them. They do have frequent illness and require total care but are NOT “unresponsively bedridden.” Please read Janvier A et al 2012. The Experience of Families With Children With Trisomy 13 and 18 in Social Networks Am Academy of Pediatrics, doi:10.1542/peds.2012-0151
    Less than optimal care as sometimes happens with trisomy 18 and 13 certainly influences survival statistics for any illness. I credit that Dr Yount’s description notes a small percent survive but his knowledge about survivors is woefully lacking and unacceptable to those who live with these children. It is accurate to tell expectant parents that these infants have significant mental and physical disabilities but they also need to know that these infants do respond to comforting, and with time, will come to know their caregiver and begin to enjoy attention. It is crucial for perinatal care providers to allow these parents this small possibility of hope. It is unfair and unethical to not do so.

    As an RN and the mother of a daughter who had full trisomy 18 (1985-2004), I encourage physicians and all health care providers to learn about children living with trisomy 18 and their families; we are people who love a child that happens to have a diagnosis.

    • John Yount says:

      I would not presume to pretend that all individuals with any diagnosis are each completely characterized by the behavior of the average, or even the activity of 90% of the population. There are well documented instances of partial development of all Trisomy conditions with only parts of the extra chromosome transferred into all the cells of the body or stuck onto another chromosome (Translocation); and more rarely only some parts of the body containing the extra chromosome
      (Mosaicism). These individuals manifest many features of the Trisomy syndromes–but will have more normal development and are to the current understanding of specialists studying them the only individuals enjoying longer survival and more complete personality development. To give people a blanket statement that if an infant with every cell containing a full extra 18 chromosome “is just given a chance” they will develop personality and will live to age 20+ is cruelly deceitful. The features of Trisomy 18 or 13 that are present will only be limited in severity if less than the total chromosome is present in each cell.
      No Neuro-Developmental Geneticist has described advanced development unless there was a limitation in the number of cells fully containing the extra chromosome material so that more normal organ development was possible because of the presence of normal cells.

      I am pleased to hear about your daughter’s longer and enjoyed survival; current understanding would be that was only possible if extra chromosome material was incompletely distributed.

      • Heidi Herdman says:

        On the contrary, what is cruelly deceitful is to give people a blanket statement that an infant with every cell containing a full extra 18 chromosome will be bed-ridden , with no personality or quality of life ,which leads them to termination, despair and guilt . How will those parents cope when they stumble across accurate information on other T18 children who are surviving and in some cases thriving, knowing that they deprived their baby of the chance to live.
        And for the record my 22 year old had blood analysis and skin cell analysis and every cell has a full extra number 18 .

      • John Yount,MD says:

        Skin cells and WBC do not make a complete analysis of body tissues.

        Was the 18 chromosome completely band analyzed or simply characterized by shape. Analysis from >25 years ago would be less complete than what is now possible. I refer you to the listing in Wikipedia and suggest that is a carefully peer reviewed and carefully documented public resource where you may contribute your opinion and have it reviewed by other caring and supportive professionals. The principal points I felt should be addressed are the need to establish full medical chart documentation of the birth, exam, and death of all living infants. Every infant deserves a birth certificate and if non-viable or experiencing limited life religious and social support arranged; and a genetic analysis and post mortem exam offered.

  21. There have been several passionate and eloquent statements made here by parents who have been positively impacted by the amazing and joyful lives of their children with T18/T13. I would encourage you to see for yourself what a child may do, given the medical and educational support needed. My daughter Mieko lived a joyful four years despite her disabilities. Please watch her videos on youtube.com/trisomyvoices to see her walking with a walker, crutches, and most of all laughing and smiling with full recognition of her friends and family.

  22. Marty says:

    Thank you Keith for being a voice in what seems to be an ever increasing wilderness.

    The Bratton article concisely details critical deficiencies in the CMA position on the care of extremely preterm babies (EPB). The flaws in the CMA position, sadly, are both clinical and ethical. The clinical challenges in predicting the survival of infants 22-25 weeks are described in the work of Tyson et al (N Engl J Med. 2008;358(16):1672–1681). This work was published concomitantly with an Extremely Preterm Birth Estimator by the NICHD Neonatal Research Network (NRN). The work of Tyson et al. work established the need to move beyond gestational age in predicting survival. The authors’ publication evaluated fetal gestational age, weight, gender, singleton status and administration of antenatal steroids. While a landmark publication, there clearly are deficiencies in this model. Batton and Batton report on some of these including the variability in dating pregnancies. Others to consider are the use of prenatal gestational age estimates as a surrogate for postnatal weights. That aside even the Tyson model, presented in the NICHD estimator, would predict a 25% survival for a 22 week, 500 gram female infant exposed to antenatal steroids.

    More recent research from the NRN also points to critical elements within neonatal centers which impact the survival of EPB. Alleman et al. demonstrate that the application of intervention measures in EPB in 16 tertiary US NICUs was so variable as to create survival rates to discharge that ranged from 28% to 90%! (Pediatrics Vol. 132 No. 1 July 1, 2013 pp. e175 -e184). These authors comment that in a substantial number of additional cases, infants would be predicted to survive both past 12 hours and until discharge should the utilization of examined interventions be increased for infants at the earliest gestational ages (<25 weeks).

    The disastrous leap which the NICHD estimator makes, based on the findings of Tyson et al., is to categorize combined outcomes such as “Death or Profound Neurodevelopmental Impairment” and “Death or Moderate to Severe Neurodevelopmental Impairment.” Absolutely parents have a right to know the risks for neurodevelopmental impairment in considering decisions regarding resuscitation for EPB infants, but the message sent by authors, even if unintended, is that such outcomes equate with death. Death and neurodevelopmental impairment are equal. The challenges of the model aside, there is not much hope when your neonatologist is telling you that if he resuscitates your child there is a 91% chance for moderate or severe neurodevelopmental impairment or death. Those are the numbers for the previously described infant with a 30% chance for survival.

    • John Yount says:

      Keith and Marty–

      Excuse the familiarity–while I have not met Marty in person and only spent an evening with Keith when both of us were cornered by Neil Finer in the first Georgetown Ben and Jerry’s after SPR (as it was called then) in about 1983-84; I have felt your common passion for the complex issues involved in assessing viability at birth and in the NICU.

      The younger fraction of the Perinatology & Neonatology crowd have no experience of all the previously bad Ad Hoc estimates of when intensive care or even compassionate attention was to be offered or not. It is my strong feeling that the best bulwark against harm to both individuals and the budget of the Canadian Health Service is committed, compassionate, informed Neonatal Attendings; who assess each instance with family interviews prenatally and personal immediate examination of newborns. My personal choice for assessment of an organ determining viable versus pre viable state is the skin for 23-24 week infants; coupled in a few instances with the response to exogenous surfactant.

      My own story in training and pre-attending includes watching some frighteningly well meaning, but bad choices and occurrences. Because I am over 70, and this chronology does not match any other legitimate format, and may otherwise be lost to perpetuity; it will be deposited here.

      In 1969 — an inaugural year of the first real NICU in Baltimore — I was an eager second year resident and we were all taught by the dynamic young Johns Hopkins based attending that no infant less than 1,500 GM should be intubated because of the first outcome studies out of Case Western Reserve. One primordial ventilator was reserved exclusively for larger infants. It wasn’t from a fear of overreaching technology, because we were also taught to use Millie Stahlman’s response to 100% oxygen data to estimate survival with IRDS — and five 1,800-2,500 GM preterm infant’s with failing numbers were placed on the first NICU based ECMO with spectacularly transient success reported in The Baltimore Sun.

      On my arrival for Neonatal Fellowship in the 1972-75 era the center that published the “first “<1,000 GM survival
      data [10 survivors out of 100 admitted in ten years] had as a standard protocol for the first 12 hours of life placing infants <1,000 GM in a Gordon Armstrong Incubator without monitoring, IV or oral intake, and no oxygen — and if they were alive at 12 hours full NICU admission was begun.

      When my first attending assignment began as the third Neonatologist in Oregon we mutually agreed to teach all care-providers to intubate and support all infants requiring assistance at birth and admit all living infants to NICU with immediate neutral-thermal and IV support. 2/3 of all infants born in the state weighing <1,500 GM were admitted to our NICU and 1/3 had prenatal referral and birth at OHSU. The 40,000 birth Oregon Neonatal mortality rate fell 20% [10/1000 to 7.8/1000] in two years. The OHSU birth data included a sudden burst of 75% survival for infants 500-1000GM. More survivors <1,000 GM per year than all ten years of the <1,000GM paper. Joe Butterfield (who watched things like that) gave us a special award at WSPR for the largest statewide drop in Neonatal mortality and the lowest level in District VIII, IX and X who were all attending the WSPR. With the initiation of surfactant treatment and elimination of Benzyl Alcohol from IV flush solutions the neonatal mortality rate has further fallen in most states to ~3-3.5/1000 and the survival for infants 750-1,000 GM is at close to all other preterm rates. The immediate result of our progressive Perinatal-Neonatal success has been to raise expectations for very low birthweight infants; and to have the resultant responsibility of deciding in the birth area which of them is viable and who is pre-viable. In addition with the advent of CNS imaging by ultrasound, MRI and CT there has been the ongoing responsibility of deciding who has suffered brain damage so severe that only supportive, compassionate care is indicated if chosen by the family.

      In my own instance there have been over 600 times in 40 years I have had to personally examine the patient's behavior, support needs, and CNS images to counsel families about considering limitation in invasive forms of support. In each instance this is reviewed with all caregivers for the child who will have a personal role in care and a palliative care or hospice support plan is only started if agreed universally by all caregivers, and after a care conference by all responsible family members and religious advisors the parents wish to include.

      There is often a misconception by lay people that a care plan limiting or eliminating by agreement some invasive care is "giving up;" or some how will determine what happens. In all instances the outcome is determined by the patient's ability to be self sustaining and independent of artificial support.
      During any observation of a patient's independence; comfort, respect and loving contact is continuously maintained.

      I do not find blanket statements regarding "all infants" with certain birthweight, gestational age or diagnosis alone to be useful or honest in most specific circumstances during consideration of care withdrawal, palliative or hospice care.

      The smallest infant a team I lead has successfully supported is 320 GM, and the youngest is 23 weeks Gestation. I have found and would still find it difficult not to recommend hospice care at Birth or at time of confirmed Diagnosis for infants with confirmed Holoprosencephaly, Profound Encephalocoele, Potter's Syndrome, Neck Fracture and Quadriplegia, Pulmonary Alveolar-vascular Dysplasia, ElectroEncephalographic Silence off medication, Grade IV IVH with Dysautonomia, Trisomy 13, Trisomy 18, Cri-de-Chat, Cornelia DeLange, Major Chromosomal Deletions or Translocations, or Polyploidy with universally documented comparable outcomes.

      For Trisomy 13, and Trisomy 18 it appears that detailed banding of the extra chromosome and multi-organ biopsy may be appropriate if desired by the family to try to obtain a more accurate prognosis. If a family does not chose the recommendation for observation of independence then all care required is provided. The recommendation of Hospice or Palliative Care for a term infant, if accepted by the family, does not result in any limitation of an infant's capacity to demonstrate a fully independent and appropriate pattern of growth and development. Any limitation is the direct result of the condition causing the medical team to recommend Hospice Support.

  23. Marty says:

    (cont) How has this translated into clinical practice? Many NICUs, in counseling families about the impending birth of an EPB, use the NICHD estimator. Unlike the determination of the CMA, the “estimator” attempts to refine predictive abilities beyond the blunt tool of gestational age recommended by the CMA. However, NICUs make decisions about which families they will actually counsel and offer resuscitation. Many have used gestational age (22, 23 or maybe even 24 weeks) as a cutoff for resuscitation. These parents never even have the opportunity to consider whether severe or profound handicap is a risk they are willing to accept for their child. Previous conversations about limiting resuscitation by gestational age have tended to focus mainly on survival. Now, however, with the formalization of a “prematurity estimator” (the developers of this tool prefer it not be called a “prematurity calculator” since in theory it applies to populations and not individuals…tell that to parents, obstetricians and neonatologists using it daily), many NICUs have limited resuscitation efforts based on some risk not just of death, but profound neurodevelopmental impairment.

    Some NICUs, when notified of an impending EPB, plug the available information (with all the previously recognized flaws) into the “estimator.” The “estimator” produces a percent likelihood for death, death or profound neurodevelopmental impairment, death or severe impairment. Parents must understand the risk for developmental impairment in an EPB. That, however, does not give any physician (or policymaker) the right to impose their own personal views and equate death with neurodevelopmental impairment. Nor does it give us the right to create a level of neurodevelopmental impairment at which we will not offer resuscitation to families.
    This concept, adopted by too many physicians in a variety of care areas, extends to trisomy babies and infants with other genetic conditions. It is the quality of life, utilitarian view of the world, that increasing numbers feel gives them the right to make such decisions for the greater good. The end result is Keith, as you point out, predictable. Lethality begets lethality whether you are an EPB or a child with Trisomy 13 or 18.

    Your words are a battle cry Keith. “It is about time that we started to advocate for our patients, for standards of care that recognize that these babies deserve appropriate medical care, and have rights as human beings once they are born.” The comments have moved into a conversation which includes treatment of our patients with trisomies. I would revise your remarks a bit Keith and add, “before and after they are born.” With the increasing use of cell free DNA testing of mom’s blood, trisomies, albeit to varying degrees of accuracy, will be identified prenatally in even higher rates. Concerted efforts are underway to identify other syndromes. The result will be pressure on mother’s to terminate their pregnancies using the biased, inaccurate information reported by commenters here.

    The fact that some centers have survivals of EPB at 28% while others have survivals of 90% clearly demonstrates not all centers treat EPB infants similarly. Many of us as neonatologists have ”accepted, and even ourselves promoted, arbitrary and non-evidence based limits to be placed on life-sustaining interventions….It is time we started to advocate for our patients.”

    • Thanks for the comment Marty,
      I think you will like the latest post in the series, which talks about how it is inappropriate to conflate death and disability. I think the NICHD calculator was a worthwhile idea, but I agree absolutely that the precise predictions are easily misunderstood, and that the calculation of ‘death+disability’ is a serious error.

      The major influences on survival at extremely low gestational ages are obstetric attitudes, and neonatologists belief systems, followed by birth weight! As John Lantos and Annie have written, in no other field of medicine would the enormous variations in survival be tolerated, there would be investigations and commissions, we have just treated them as interesting foibles.

      I haven’t got into the debate about antenatal diagnosis, but I probably will. More data about genes without good balanced information about outcomes will probably lead to widespread increases in terminations, for diagnoses which have little effect on quality of life.

    • John Yount says:

      Marty–

      Your passionate vehemence and support for “our” patients is I am sure sincere and heartfelt. I trust there is the continual allowance for the family to be the final arbiters of what is done for their child. They are truly and ultimately the children of families who we serve. What do you do if one or both parents do not want their 23 week or profoundly dysmorphic infant resuscitated?

      They each have their own life demands and levels of emotional strength. Do you tell them they have no choice other than pay for emergent NICU care and admission with full care?

      In the “Baby Doe” era under Reagan’s first Secretary of Health Education in the US this infant was transferred to my university service under court order for “nutritional, IV, and antibiotic support.” In my real life example this term infant’s severely dysmorphic brain was balanced between a partially closed cranial cavity and the larger dimension encephalocoele hanging off the back of her partially closed skull. Supporting her neck to offer nipple feeding caused a profound drop in heart rate from direct pressure on the brainstem. She exhibited multiple abnormal reflexes and no normal ones.

      The well meaning anonymous caller on the Baby Doe hotline told a lawyer in Eugene -150 miles away–who was a retarded citizen advocate; that a child on the Oregon coast was being starved because she was retarded. The lawyer went for an immediate court order and neither the judge or lawyer ever actually spoke to the physician or family and simply had the State Police enter the small community hospital with an order to transport the child. This was one of the most misdirected insertions of “advocacy for a patient” separate from a physician guided parental plan of care I have personally confronted.

      My only concern is for the right of a parent to say — “No, for me it is beyond my capacity, resources, and personal strength to do more than offer my child nipple feeding, comfort and love. I do not want my quadriplegic, unresponsive infant with obvious anatomic and physiologic damage to be intubated if required and receive $10,000/day intensive care.”

      Whose patient was she? I never was able to even speak to the family. The lawyer and judge never called back or visited.

      How do we avoid inflicting this kind of Draconian social and family damage when the state supported medical system decides whether all infants are intubated regardless of family desires?

  24. Marty says:

    Dr. Yount,

    Let me restate my concern over the current state of neonatology as regards EPB and infants with challenging genetic conditions. My “vehement passion” is not for attempting to prolong life at all costs, it is for honest discussion and true informed consent for families. The thought that neonatologists would determine that we will not even discuss the possibility of resuscitation with a family whose infant is 22-24 weeks gestation, in the face of current literature, should provoke significant distress. To answer your question John, if a parent does not want their 23 week infant resuscitated, I support that decision. The point is we as a specialty have increasingly jumped on the utilitarian, paternalistic bandwagon. We have created “estimators”, which have become calculators (no doubt being well studied by healthcare finance officers), and have demonstrated a willingness to impose our own personal biases, or the biases of society, on families facing the most challenging perinatal circumstances.

    You state Dr. Yount, “It is my strong feeling that the best bulwark against harm to both individuals and the budget of the Canadian Health Service is committed, compassionate, informed Neonatal Attendings; who assess each instance with family interviews prenatally and personal immediate examination of newborns. My personal choice for assessment of an organ determining viable versus pre viable state is the skin for 23-24 week infants; coupled in a few instances with the response to exogenous surfactant.”

    It appears that you see a dual challenge for neonatologists: limiting harm to the individual while being a steward of healthcare dollars. I believe we partly agree. I hope. I will presume the “individuals” mentioned in your statement are “our patients.” My oath as a physician was not only to limit harm but to prescribe treatment for the good of my patients, which in all but the most unusual cases includes their parents. I will also presume that the harm you refer to includes all the harm “our patients” may suffer, whether from overtreatment (which you seem particularly concerned with), but the undertreatment of therapeutic nihilism, whatever its roots, that leads to death. As far as the welfare of government budgets, it has nothing to do with my mission or any oath I have ever or will take Dr. Yount. This thought never enters into my consciousness in performing the sacred duty I have to “our patients” and families.

    Critical in the delivery of the care we do or do not provide to tenuous infants is a committed, informed and compassionate neonatologist. Agreed. This neonatologist should be “vehement” in his determination to support the best interest of his patient and the patient’s family. That’s the kind of neonatologist I want caring for my child. Critical to assuming this role in the care of EPB is discussion, when possible, before delivery with families. This is my point Dr. Yount. Based on the best data, physicians need to put aside their personal views and concerns about government finances, and honestly discuss options for their child who is at the border of viability. The literature is clear that we are not unified in this approach. When evidence shows us that based on resuscitation policies EPB survive at rates from 28-90%, we have a significant problem. We simply are not being honest with families. We have determined in some of these units that we believe some babies should just die.

    “I trust there is the continual allowance for the family to be the final arbiters of what is done for their child.” This is another straw man Dr. Yount. I am not advocating mandated resuscitation for all borderline viable infants. I am advocating and call for neonatologists to commit to open and honest informed discussion with families based on best available evidence. This is not a directive exercise. “Our patient” is the infant, and their family, and we should be willing to discuss and offer available treatment options. These options should be discussed no matter what the attending neonatologist might choose personally, or what the state might actively discourage.

    As for determining viability sir, I appreciate that in my mid 50s I do not have the experience you have had, but your personal preference for determining viability by the skin appearance of 23-24 week infants has no basis I am aware of in the literature. If anecdote is the basis of decisions, and it shouldn’t be, I can report having resuscitated a handful of true 22 week infants, generally in cases where dates were uncertain (and they generally are, no matter what we think) and parents wanted resuscitation. Two of these 5 or so infants stand out. Both of these infants had extremely immature skin, massive fluid requirements and survived. Both had normal developmental outcomes when I last saw them at 5 and 6 years of age. These are perhaps not typical cases, not cases I would use to drive my practice, but both cases that support the findings of reports that it is certainly possible for 22 week infants, given the opportunity, to survive.

    The literature supports that if EPB are to survive, there needs be early early initiation of appropriate resuscitation. Certainly surfactant administration is part of this effort. However, time dedicated to gestational age assessment in the DR before resuscitation is time lost for resuscitation. Repeatedly, and in this blog recently, gestational age assessment alone has been shown to be inadequate in predicting individual survival. The appearance of an EPB in the DR is not predictive of survival, the response to resuscitation and need for CPR is. Unfortunately you only have this information if you make the effort to resuscitate. My intolerance for the translation of the work of Tyson et al. into an “estimator” aside, this work gives us some insight into the variety of other factors we need to consider in predicting survival beyond gestational age.
    (cont)

  25. Marty says:

    I appreciate your words describing a commitment to compassionate care for infants with challenging diagnoses, but the diagnoses you suggest that should receive only hospice care is a bit disturbing Dr. Yount. Holoprosencephaly? Holoprosencephaly encompasses a wide spectrum of forebrain and midline defects, with an accompanying wide spectrum of clinical manifestations. Cri du Chat? Cornelia DeLange? These are syndromes associated often, though not always, with severe mental deficiency but are not generally considered “lethal.” Then you report that infants with Trisomy 13, 18 and other “major chromosomal deletion with universally documented comparable outcomes” are only worthy of hospice care. Your list of hospice amenable diagnoses is a hodgepodge of conditions that might be lethal (severe pulmonary hypoplasia and alveolar capillary dysplasia), as well as a larger and more frequent number of conditions that are often not immediately life threatening but are typically associated with more severe mental impairment. What is the “universally documented comparable outcome” you are referring to Dr. Yount and who decides what other comparable outcomes in fact are? Based on the conditions you describe it would appear the potential for moderate or severe mental impairment is one of these outcomes which you believe should limit a newborn’s care to hospice only, and it seems you feel you as a neonatologist are capable of making that decision.

    Your comments on the genetics and survival of infants trisomy 13 and 18 are, much as your delivery room assessment preferences, personal opinion sir. That is all well and good but does not make it science, no matter how long you have been in the business. Decreeing that, “No Neuro-Developmental Geneticist has described advanced development unless there was a limitation in the number of cells fully containing the extra chromosome material so that more normal organ development was possible because of the presence of normal cells,” does not make it true Dr. Yount. Where is your reference for this statement? You state, “To give people a blanket statement that if an infant with every cell containing a full extra 18 chromosome ‘is just given a chance’ they will develop personality and will live to age 20+ is cruelly deceitful.” This is a third strawman. Such counsel would not be an informed and honest conversation, and I don’t think any of the parents on this string would advocate such counsel. Would you agree Dr. Yount that it is cruel to tell a mother, “I am pleased to hear about your daughter’s longer and enjoyed survival; current understanding would be that was only possible if extra chromosome material was incompletely distributed,” given there is no data to support such a statement. I have cared for children with full blown Trisomy 18, no mosaicism, who were severely impaired but they absolutely recognized others, participated in family life, and were able to eat by mouth. Don’t believe me, go to the reports here (Pediatrics. 2012 Aug;130(2):293-8.) The statement, “The developmental limitations are severe with no documented fully manifest Trisomy 18 infant developing recognition of self or care givers,” is false and perpetuates the myth that Trisomy 13 and 18 infants are not worthy of care beyond hospice.

    The data you report for survival of trisomy infants is what many historically report Dr. Yount but is based on flawed and suspect data. A recent report from the US Kids Study (Pediatrics Vol. 129 No. 5 May 1, 2012 pp. 869 -876) identified that 41% and 32% of the hospital records were of children over 1 year of age with trisomy 13 and 18, respectively. Further, in >10% of discharges, the child was over the age of 8 years at time of admission. Other recent data suggests much higher survival rates when supportive therapy is offered children with these conditions (Am J Med Genet A. 2011 Nov;155A(11):2641-6.) The older data suffers from the problem of the self-fulfilling prophecy. When parents are told by medical providers, as you would have them be told, that a child has a lethal condition, they tend to believe it. As a result these infants are denied not only potentially lifesaving therapies like respiratory support and surgeries, but even basic support like feedings. The fact is lethality begets lethality. I will refer you to a letter to the editors of the Journal of Perinatology for more details of how neonatologists have used poor data for decades to build the case for trisomy lethality. (J Perinatol. 2011 Sep;31(9):630-1) It is a disturbing story which it seems some are willing to repeat for EPB.

    I am not advocating that every baby have everything done Dr. Yount. I simply want us to be honest and put aside personal views which classify those who might be severely mentally handicapped as unworthy of life, incapable of life, or what a provider judges to be an undue burden on a family or society. That is not my decision, nor yours, nor the state’s for the conditions under discussion here. The one year survival for infants with Trisomy 13 or 18 who receive support is 25-40%, not the 5% routinely quoted. These children will obviously not live 70 years. Their life will be different than the life you might allow for a child John. Does that mean that this child’s life is meaningless? Does this mean that the short life of a handicapped child cannot have incredible value? Does that mean parents are to be denied the information and autonomy which allows them to make an informed decision about whether their baby lives, even a short life, or dies? I think the testimony of parents on this string and the work of cutting edge researchers like Annie Janvier and Barb Farlow should give you pause in your definitive statements regarding the short list of infants who are only worthy of hospice care sir.

    On a more philosophical level, Annie Janvier poses this question in a new paper, “What kind of society do we want to live in?” (Acta Paediatr. 2013 Sep 25. doi: 10.1111/apa.12424). She answers her own question. “In our opinion, fragile neonates with short lives can enrich society. We live in a society that is at often centered on goals, excellence, performance and perfection. While these have value they can impoverish if taken to extremes. Many parents report that having a child with a life-threatening condition was difficult, but that it also enriched their lives and had a positive effect on siblings. They learned to love and expect nothing in return, they learned that imperfection does not mean inferior, they learned to not take life for granted, and they learned to celebrate every day as if it was the last. While some authors propose moral enhancement through medications, we have observed that these short fragile lives morally enhance society by having a positive impact on those who love them.”

    The current state of Western culture makes it difficult, if not impossible, to appreciate, but the word from families that choose to proceed with a trisomy pregnancy and perhaps take home a child with a trisomy, is that while they are severely challenged, they are also blessed. There are multiple studies documenting the satisfactory quality of life perceptions of families and even now young adult former EPB (J Pediatr. 2013 Oct;163(4):1008-13 and Early Hum Dev. 2013 Apr;89(4):209-13). I paraphrase Morris West but to many in our world moderately or severely impaired children are imperfect, a mistake which should be swept away and forgotten. For the families who love these children, however, these children are innocent and flawless. They are incapable of intentional offense, they live in the moment, they are love and perhaps for the utilitarians amongst us, they are necessary to us. These children, if we can accept them, will evoke the kindness that may be one of the last opportunities to keep us human.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s