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ARTICLE: Brian Skotko Mothers of Children With Down Syndrome Reflect on Their Postnatal Support Pediatrics 2005; 115: 64-77 [Abstract] [Full text] [PDF]

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misinformed on Down syndrome

Cheryl B Young   (3 January 2005)

Author Response to: Misinformed on Down syndrome

Brian G Skotko   (3 January 2005)

Bravo

Amy Sue Martin   (5 January 2005)

When do you inform about the positive aspects of Downs sydrome?

Thor WR Hansen   (8 February 2005)

Author response: When do you inform about the positive aspects of Downs sydrome?

Brian G Skotko   (11 April 2005)

misinformed on Down syndrome 3 January 2005
Cheryl B Young, clinical nurse consultant Send letter to journal: Re: misinformed on Down syndrome cbgy{at}aol.com Cheryl B Young	I would have liked to hear your report on this subject including more on the importance of AFP testing for all pregnant women at 17 weeks. I think it is the responsibility of the ob-gyn healthcare provider and their practice to properly inform of the risks of Down Syndrome and the importance of this simple blood test.The way I was taught to most objectively tell my patients about it was to say"what would you do with the results? If you would do nothing, then don't have the test. If you would like to exercise your options, then have it". I say to those who chose NOT to have the test, you have no complaining to do at time of delivery. Don't act as if this comes as a surprise when you had the option to know. There are many people who would be wonderful parents to children with defects of any kind and others who would not. The point being there is an option out there for you to decide on. So if you chose not to know ahead of time, you have no right to blame the physician for anything related to the outcome. Thanks for taking the time to read this.
Author Response to: Misinformed on Down syndrome 3 January 2005
Brian G Skotko, medical student Harvard Medical School Send letter to journal: Re: Author Response to: Misinformed on Down syndrome Brian_Skotko{at}student.hms.harvard.edu Brian G Skotko	I recommend that this health care provider read my research study entitled, "Prenatally Diagnosed Down Syndrome: Mothers Who Continued Their Pregnancies Evaluate Their Health Care Providers," which will be published in an upcoming issue of the American Journal of Obstetrics and Gynecology. This article will answer many of the questions that have been raised by this reader. I should forewarn, however, that this health care provider should expect to be challenged by the results. Mothers in this upcoming study will directly call upon obstetricians and genetic counselors to deliver compassion with their medical diagnoses. Offering a prenatal test does not provide a physician immunity from blame for subsequent actions. Comments, such as "Don't act as if this comes as a surprise when you had the option to know," are neither appropriate nor respectful, mothers say. This prenatal study will offer specific recommendations on how obstetricians, like this reader, can improve their practice of medicine so that all pregnant women receive the compassionate care that they rightly deserve. Brian Skotko
Bravo 5 January 2005
Amy Sue Martin, educator Send letter to journal: Re: Bravo amy{at}wade.org Amy Sue Martin	Thank you for your article it is much needed! I gave birth to a daughter with Down syndrom in 2000. Ours was a different birth, as it was at home with a midwife (in the middle of a large city). The delivery of the message was perfect. I was shocked after becoming part of the Down syndrome community to find others who had been told under the worst of conditions, told to "give up" their children, told they could have terminated had they "bothered" to get an amnio. Anyway, thank you for this study, and for helping push us into the 21st Century. Virginia (now 4) is potty trained, knows all her letters and is beginning to speak in sentences . . .she is pure potential. Thanks for helping the world raise expectations, find hope and catch up!
When do you inform about the positive aspects of Downs sydrome? 8 February 2005
Thor WR Hansen, Professor & Chief, Section on Neonatology Department of Pediatrics, Rikshospitalet University Hospital, Oslo, Norway Send letter to journal: Re: When do you inform about the positive aspects of Downs sydrome? t.w.r.hansen{at}medisin.uio.no Thor WR Hansen	First, I would like to express my appreciation for a very important study and publication. There are extremely important lessons to be learned here for all health workers who may at times find themselves in a situation of having to convey difficult news. Some of the callous, insensitive, and demeaning comments which were quoted were enough to make me ashamed for our profession. However, I feel that the author might have reflected a little more on how to interpret the mothers' desire for "more positive information" about DS even from the time they received the first information about the possibility of this diagnosis. Most of the mothers who were asked to give their responses had lived with their children/ offspring with DS for a long time (some more than 40 years). They love their children, they have joined a parents' association, and undoubtedly have received a lot of support as far as being able to see the many valuable aspects of life with a person who has DS. This is wonderful, and really it is the way we would hope things would be for people who have the ability to look beneath the surface. However, this is surely not the way things were at the outset. Some parents may have had the chance to prepare for the birth of an infant with a severe congenital anomaly or illness because they have had access to prenatal information. In the absence of such preparedness, all parents with whom I have had the opportunity (and privilege) to speak over the years have expressed sorrow, concern, and grief when told that their child had an illness or anomaly. This is not hard to understand. I have yet to meet parents who, during the months of pregnancy, did not have dreams of the wonderful, "perfect child" who was soon to be born. The birth of a child who has an anomaly, be it DS or whatever else can be found in our textbooks, represents a loss of that dream. To grieve over that loss is legitimate, and we as health care workers need to respect that grief and do our best to assist the parents in working through their grief and sense of loss. One of the inspiring aspects of life as a neonatologist is to be able to observe the greatness in "ordinary people" as they work through their sense of loss and come to love and accept their child as she or he is. But they should be allowed the time they need to arrive at that acceptance. For this reason I believe that we, during our initial information session with the parents, need to be extremely careful as to how we express our thoughts on the "positive aspects of DS" (or any other disease or anomaly), lest we fall into the trap of appearing to make light of the parents' legitimate grief at this particular point in time. I also believe that there is a distinction between saying "positive things about the child" and saying "positive things about the syndrome", and in reading the paper I found myself asking whether it may not perhaps have been as much the former as the latter these mothers were wanting. I totally agree that we should say all the nice things about the baby that we can find in our hearts, and I personally have a hard time remembering a baby of whom I couldn't truthfully say that she or he was "beautiful", or had "a lot of character", or had "a chin that looks like Dad's" or many other comments that parents enjoy and find complimentary. To conclude, I fully believe that there are many positive things that can (and should) be said about people with DS and their impact on our lives, but I remain uncertain as to whether the very first information talk is the right time to go into detail on that. At the very least, I think the choice of words and the amount of detail need to be very carefully considered. It would be of great value to hear what parents of children with DS have to say about this.
Author response: When do you inform about the positive aspects of Downs sydrome? 11 April 2005
Brian G Skotko, medical student Harard Medical School Send letter to journal: Re: Author response: When do you inform about the positive aspects of Downs sydrome? Brian_Skotko{at}student.hms.harvard.edu Brian G Skotko	Thank you for posing this question and for reflecting, sensitively, about the manner in which physicians convey positive information about Down syndrome. Mothers in this study--and again in the prenatal counterpart published in the March issue of the American Journal of Obstetrics and Gynecology--made it clear that they would like balanced information from their physicians when the initial diagnosis of Down syndrome is discussed. Mothers have asked that pediatricians and neonatologists include relevant information about the possibilities and potential of living with Down syndrome during that initial discussion. This does not mean that a mother does not have a right to grieve-- almost every mother who responded to the survey expressed some sense of loss. But, mothers can still grieve and receive positive information at the same time. Mothers have asked that they receive a complete and accurate portrait of Down syndrome, and including the positive elements is part of that picture. On a final note, I would like to underscore the importance of linking mothers with local Down syndrome support groups, if desired. No one seems to be able to connect with mothers about the birth of a child with Down syndrome like another parent who has gone through the process. They can validate the feeling of loss and help the new mother (and father) discover the joys that nestle in their new child.