Harvard Student Inspires Bipartisan Bill

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Harvard Student Inspires Bipartisan Bill

March 18, 2005

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A few weeks ago, one of my classmates published a Down syndrome study in the American Journal of Obstetrics and Gynecology. Now, he finds his ideas working their way through the Capitol:

Harvard Study Leads to Legislation (Boston Globe)

Brian Skotko’s survey found that doctors don’t provide pregnant women with enough information about Down syndrome and the prospects for their child after birth. All too often, said Skotko, the mothers received the news about their child in a negative, gloomy fashion that failed to relay any positive information about the child’s life expectancy and possible development.

On Wednesday, two senators offered new legislation that would require doctors to provide expectant mothers with up-to-date, scientific information about the child’s condition, possible treatment options and expected development. It also calls for a study of existing health care and support services.

“Our real vision should be for families to grow and prosper and continue to bring new life into the world — and we need to support that effort,” said Sen. Edward M. Kennedy, D-Mass.

Skotko, also a student at the John F. Kennedy School of Government, culled his study results from 1,250 survey responses he got from mothers in Down syndrome parent organizations in Massachusetts, Rhode Island, California, Colorado, and North Carolina.

“Doctors continue to find it very challenging to deliver a diagnosis like Down syndrome to an otherwise happy expectant mom,” said Skotko, who has a sister with Down syndrome.

Quite impressive. Though I haven’t read the study, I can attest that Brian’s a very smart guy, so I’m hardly surprised that he’s made such an impact. It must, however, frustrate many academics (including, perhaps, some of our own professors) who publish countless brilliant papers that never escape the ivory towers, let alone get widely read by peers.

Anyway, here’s the university press release. Best wishes to Brian and his cause.

5 responses to “Harvard Student Inspires Bipartisan Bill”

flaime

March 18, 2005 at 6:47 pm

So, now we are supposed to tell parents that their child will be a permanent drain on society without contributing anything useful with a smile on our faces?
Sam

March 18, 2005 at 8:24 pm

The idea of giving better and more complete information sounds good, but why does this need to be a federal law? Sounds like a recommendation by a professional organization (e.g. the AMA or the American College of Obstetricians and Gynecolgists) would be more in order.
JHeath

March 19, 2005 at 5:31 pm

It is the ignorance of inidviduals such as yourself, “flaime”, that causes such problems in our society.

You apparently have not had the pleasure of knowing a person or child with Down’s Syndrome. If properly raised and appropriately challenged, they can be productive members of our society. People with Down’s Syndrome are just like you and I, only they typically do not learn as quickly. I have seen some very remarkable people with Down’s Syndrome–some actors, some baggers at grocery stores, some even college graduates.

The bottom line is, they could have been born with the same number of chromosomes as you and I, but they were born with “a little something extra”, which should be perceived as a gift, not a limitation.
Vern

March 19, 2005 at 7:20 pm

I have a child with Down syndrome and he is a wonderful little boy who is loved by his two sisters and all who come in contact with him. He may never become a brain surgeon, but then neither will most of us! Unfortunately, many people think that Down syndrome is such a terrible condition that they choose to abort when they find out prenatally about their child’s disability. This bill will help parents make a more informed decision, rather than believing all the stereotypes and misinformation perpetuated by people who know very little about the productive and inspiring lives of individuals with Down syndrome.
Patricia Tice

March 20, 2005 at 5:31 pm

I was given a child with Down Syndrome two years ago, not exactly by my choosing. In the end, I am happy to have birthed any child after 7 pregnancies with only one other live birth. PJ (my first son) is practically perfect in every way. Katie is a real challenge. Unlike the sweet, naieve steriotype of the “downs” child, she is exactly as her name describes: Pure (as in intense, powerful: $50,000/oz perfume, not toilet water). I had some exposure to kids with DS before but was truly afraid of them in many ways. Their lack of mental acuity and impulse control really intimidated me, especially as they got into their teens. Still, as I have been around more of them, those fears may not have disappeared, but they have moderated. I have seen many undisciplined DS kids with no boundaries, but I have also seen several that have college degrees and full time jobs with perfectly appropriate social skills.

Unfortunately, our birth experience was not a positive one and it hindered our adaptation and grieving. My OB blurted it out in shock in the delivery room before we even got a chance to hold her. The nurses in the hospital avoided us and tried to take my baby away from our first contact for lab tests that could easily be done at any time in the rest of her life. For my husband, it was like telling a football GM that he had just signed his perfect draft pick for the next fourty years and in the next two minutes finding out that he will be out with an ACL tear–possibly the whole time, with no hope of renegotiating.

No one came and told us anything, because no one had to. It is an uncomfortable subject at best and it is easy for any set of medical professionals to consider it someone else’s job.

Frankly, there are groups that are very good at telling the details of what it can mean to have a child with DS, people who will come to a hospital room and unflinchingly tell you, “Congratulations, you have a beautiful baby,” when no one else will. It may not be a doctor who is able to do that, but he darn well better know who can. Raising a child with DS is not easy, but it is not all bad either.

There are treatments and therapies that can allow most kids to live a normal, productive life. Every advance in Alzheimers research, or MS research is hope for a better life for Katie. Enzymes and supplements help to improve her immune response and her cognitive function. At the moment, if we could understand what she is saying, she would be a perfectly normal 2 1/2 year old. We have already started teaching her to read and she loves staring at books for hours at a time. Many cannot even tell that Katie’s almond eyes are not as they should have been–at least until she laughs and her eyes betray her to the delight of all.

The real suprise was how much value I had placed on the content of one’s head to judge the value of their life and contribution to society. Out of my own arrogance that may never completely change, but I’ve seen much more accomplished by her peers directly and indirectly than many who are far smarter. As Forrest Gump’s mom said, “Stupid is as stupid does.” I’ve seen a 9 year old girl who can’t even read, sit as chief lecturer to a dozen or more kids in a remote Mexican village, holding their rapt attention while her family builds homes for their community. Within the last few years, the cure for cancer may very well have been discovered through research into Down Syndrome.

That first year with a new baby is so pivotal both for the child’s development and for the survival of the family. Much of the tone of that year is set in those early discussions with medical experts. Whether they like it or not, their attitude toward this baby (and in the end it is still a baby) will make a huge difference in how hard that first year will be. Silence from the medical community communicates loudly that this is the worst possible news, and it doesn’t have to be that way. If a doctor feels uncomfortable about delivering this kind of news, then it is their responsibility for the sake of the health of the child and the family to get help. Remember the primary rule of medicine: “First do no harm.” Many doctors have unwittingly devastated the most important year of the child’s (and maybe the family’s) life by allowing their own personal sentiments to cloud their delivery of this news. There are countless numbers of Down Syndrome associations and families that would be delighted to accompany the physician for that sensitive conversation.