Thursday, September 28, 2006


I just finished reading the book The Memory Keeper's Daughter, a novel about an orthopedic surgeon and his family. The story begins with the orthopedic surgeon having to deliver his own wife of twins because a blizzard makes it impossible for them to get to the hospital. The first twin is a fine boy, but the second twin he recognizes as having Down syndrome and tells a nurse to take her to an institution. Instead, the nurse takes her to another town and raises her as her own child.

There are a few unrealistic things in the book - the idea of an orthopedic surgeon making an instant, certain diagnosis of Down syndrome is a bit far fetched; usually we pediatricians are looking at a baby and trying to decide whether the child really has Down syndrome or not, and wait for the chromosomes to confirm it - but overall it was quite good. It gave some glimpses into what it might be like to raise a child with Down syndrome, showing both some of the heartaches and triumphs. The part I found most striking , though, is when the twin brother, who previously has felt sorry for his sister because she has Down syndrome, comes to the realization that he need not pity her because she is quite happy and content with her life - perhaps even more so than he is.

It reminded me of a study done in Canada looking at very premature NICU survivors who were now teens. Although they had some challenges in life, both mental and physical, their feeling of self worth was actually greater than that of a control group of "normal" teenagers. Happiness did not depend on how smart or well coordinated you were.

I like that lesson - happiness does not depend on intelligence - but I wonder how far we can extend it. Certainly there are people with mental retardation, either from Down syndrome or other causes, who lead happy, fulfilling lives. But is there not a limit to how impaired one can be and still have a happy life? I know that some parents of children with Trisomy 18, kids who are much more impaired than kids with Down syndrome, believe that their children are happy, and although it seems to me that Trisomy 18 children have to suffer a fair amount in life, who I am to contradict that? What about more impaired children, though? Kids with Trisomy 13 are usually even more impaired than Trisomy 18 kids. I remember one from my residency who had lived unusually long, to the age of 13 years, and he always seemed miserable.

I don't have the answer to this, but I'm going to be very careful when making value judgements about what lives are worth living.


Anonymous Anonymous said...

I absolutely loved that book, I'm glad you got a chance to read it!

8:44 PM  
Anonymous Kelley said...

Guess I'm gonna check that book out, sounds like a good read. I've often thought your very thoughts as far as the following, "But is there not a limit to how impaired one can be and still have a happy life?". Who am I to even guess, I suppose. But, before the bandwagon jumps all over you for that thought, I, as the mother of a child with DS, have thought the same about other, more severely affected people in the world and wondered just that. Honestly, I worry more about the kids with things like (please excuse spelling) "Harlequin Icktheosis" or the disease where the skin falls off. There's a little boy who's about 7 who has therapy at my aunt's clinic who has that disease, or disorder, whatever it is. I know the butterfly is a symbol for their groups. He's in constant pain, he can't play like any other children, there's no cure...and he is functioning at full mental capacity. There's more, like Progeria. That just breaks my heart. Down Syndrome is a BREEZE compaired to so many other things. We live normal lives around here with little to no focus on the DS diagnosis. To me, there's a fine line between advocating and further segregating..oh well. But you reminded me of something when you spoke of the unrealistic thing, the idea of the surgeon making the instant diagnosis... My son's neonatalogist SWORE that my son did NOT have DS, lol, the head nurse swore he did, so I can certainly relate to your point. It was a hard sell though, my boy didn't/doesn't have a nuchial fold (please excuse spelling here), nor does he have the simian crease, he was 22 1/2 inches long at birth with long legs and arms, long fingers, he has a nasal bridge.. His only markers at birth were the heart defects, slightly slanted eyes, ever so slightly, and the sandal gapped toes. You are absolutely right it's hard to tell many times.

1:03 AM  
Blogger Awesome Mom said...

I just finished that book too. I enjoyed it very much.

2:52 AM  
Anonymous Anonymous said...

Perhaps those who feel it best to "untether" their children from a life with DS could gain some insight from this book.

8:05 AM  
Blogger michelle said...

I just gotta have been posting a great deal lately about these issues. Are you thinking differently now than before? Are you reading the comments? What precipitated this line of thinking lately? The cyncial part of me he doing it for the traffic it is generating? (Not an ignoble thought, actually, just wouldnt be what I would hope was the reason) or are you doing this because you genuinely are having a change of heart?
I have been wondering for days now if we were part of some experiment in human behavior, the tit for tat postings and the genuinely heated debates that come up on this issue. It is a shame really that we dont have more of them, because I think in some ways they allow us to see each other as human beings and not just sides of a coin. Are you following the debate, and do you have the guts to tell us all what you really believe on the issue? Has anything we have said changed how you feel about kids with DS? It almost seems to me that since (was it only 2 weeks ago?) you posted about there being no hope, your posts have been leaning more towards a real understanding of our perspective.
Part of me wants to take that and run with it. Another part of me wonders how genuine it is, or if it is a ratings booster. I would love to know what you think, how this is impacting you, personally. And how that will impact you professionally? Because, in the end, how it impacts you is how it will impact someone's child, who is born with DS and needs a little hope.

9:02 AM  
Blogger karrvakarela said...

"But is there not a limit to how impaired one can be and still have a happy life?"

I guess it depends on how you define happiness, what parameters you use.

9:35 AM  
Anonymous Anonymous said...

All life has value.

10:50 AM  
Blogger The Pajama Mama said...

I have finally ordered this book and look forward to reading it. Raising two children with Down syndrome has taught me more than I could have even imagined. My children are happy. They have an amazing quality of life and they don't need any pity. They may have to work harder, but their rewards are that much sweeter.

I am thankful every day that my daughters' mothers chose to give them life, even if they chose not to raise their daughters.

1:31 PM  
Blogger neonataldoc said...

I'll respond to other comments when I have more time, but I just wanted to tell Michelle that I never said Down syndrome children have no hope. The question was, "Is there any hope of normal intelligence." Saying there is no hope of normal intelligence is a far different thing than saying there is no hope.

More later.

4:44 PM  
Blogger michelle said...

you got me Doc. Apologies. Looking fwd to your reply.

4:50 PM  
Blogger Dream Mom said...

I have that book on my list and look forward to reading it too.

I am not sure I know the answer to how impaired one can be and still be happy. I do know that my son is severely disabled and extremely happy. Always has been. Every note and assesment over the years has been the same-on what a happy, extroverted child he was and is. I think he has a good sense of self too. I think the greatest gift you can give your children, regardless of their intellectual status, is the sense of self esteem, making them feel good about who they are. I thought it might be more difficult for a child like my son, who did not have as many abilities but it did not seem to be the case.

When I look at his classmates, many or all of whom are mentally and physically impaired to varying degrees, they are a happy bunch. I wrote a few times about one of his classmates, Patrick in particualar, who rode the bus with him. He was an outgoing mentally impaired kid with a fair amount of language. I remember when I attended Dear Son's graduation and Patrick walked down the stairs,a woman behind me said, "I love that kid." and the other people in the group agreed and went on to talk about him.

Spending time with these kids in the classroom, has made me look at their lives much differently. They aren't to be pitied, just to be enjoyed, like other kids.

9:36 PM  
Blogger neonataldoc said...

Thanks all. Kelley, yes, you're right, there are some awful things that some people have to live with, things that many of us don't even realize exist. It's good to hear people like pj mama and Dream mom say how happey their kids are; It's not something many of us associate with children with disabilities.

Michelle, you raise such interesting points that I'm going to save them for a post sometime. (I'm always looking for ideas of what to write about.)

4:27 PM  
Anonymous Anonymous said...

With refernce to the study you metioned, do you not think that the NICU survivours had better self worth because despite the challenges they faced they were encouraged more by parents & teachers and perhaps were dealt with more sympathetically overall?

11:02 AM  
Anonymous Mo said...

Interesting to see that the pro-life posters from earlier don't have much input here. Here's mine: my daughter is intellectually impaired by brain damage caused by asphyxia. She has PVL, cerebral palsy epilepsy. She isn't in pain, and will not get worse. She is unquestionably MUCH happier than her able bodied sister. She is simultaneously hard work and a delight. Here's a quote I am fond of: "The world is full of terribly intelligent people who are real sh...ts" (Fred Varga)

11:53 AM  
Anonymous Mo said...

Actually, I find I can't leave this particular question alone. It doesn't have a simple answer, but, as my daughter is 29, I have, on and off, given it some thought. On the whole, I do agree with an earlier poster that all life has value (I differ from the pro-lifers in my view of when "life" starts - for me, it is at birth). There are people of high intelligence and/or bodily skill who contribute highly to society. They can also take quite a lot from society and their skills are no guarantee of happiness. I have an IQ somwhere in the range of 140++, so does my husband, so does my younger daughter. We are in reasonable health. Are we happy? Some of the time. Generally, I think that high intelligence is more likely to cause dissatisfaction and anxieties than peace of mind, and that a simple mind is probably more easily satisfied. Are we more deserving of the world's resources? On what grounds? We give, and we take. So does my disabled daughter.

Personally, I get very irritated by both the sentimental "Down's Syndrome children are so loving..." oversimplifications, and the pseudo-hard headed brigade who see my daughter's life as worthless and a drain on resources. There are no easy answers.

9:04 AM  
Blogger neonataldoc said...

Very true, Mo, very true.

8:49 PM  
Blogger The MSILF said...

In an ethics class, they presented us with a study that people on mechanical ventilation (chronic), when given QOL tests and so on, came out as much happier than their doctors. The point was that you can't really gauge someone else's life. Also they found out that doctors are more unhappy than most people, and that happiness and intelligence are inversely correlated.

12:31 PM  
Blogger Jawndoejah said...

I had a positive screen for t-18, and had one sonogram that showed a baby one week behind original crown rump sonogram estimates. If we have a t-18 baby (or some other problem that might give such low numbers), we plan to carry to term and give our baby the full attention we can give him/her. It's the choice we are making for our child, to let nature take it's course with the life we have as long as we can. If we can make the baby more comfortable, so be it. I have read stories of how parents have handled this sort of situation, and I think quality of life really depends on how much we can do and will do for the child. If the child has willed to live to birth, I'm going to give that baby every chance I can.

I know it's hard for doctors who see the pain and less than perfection these chromosomal anomolies bring. Still, I appreciate that you understand you cannot judge quality of life fully for each parent.

7:20 PM  
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1:31 AM  

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