This Is About Execution, Baby

New business ventures succeed only if they have a strong business plan. You must find or create a need for your product. And then you must latch on to that need and promulgate it over and over until it becomes a necessity... stitch it into the fabric of your culture... make it the gold standard.

And that is exactly what the companies Sequenom and Verinata are doing with their prenatal blood tests that can indicate whether or not a fetus has Down syndrome. They are capitalizing on old fears, outdated ideas and stereotypes, and the need for a perfect child to the tune of an estimated 2 billion dollars a year.

Today www.xconomy.com published an article, written by Luke Timmerman, touting Verinata’s release of their version of the MaterniT21 blood test developed by Sequenom,

"The promise of this eventual capability has been in play for more than 20 years. Now when it’s finally here, there’s a wonder and awe in the community,” says Caren Mason, Verinata’s CEO.

Awe and wonder... I don’t think that is what I feel. Pissed off is what I feel. If you have time, go read the article. It provides the most straight-forward admission of what this push for prenatal testing is about, money. I am not against prenatal testing but I am against pressure to get prenatal testing and/or to terminate based on the results of testing.

The company has hired genetic counselors to help doctors with communicating results to patients, and has people working on economic impact, which it hopes will persuade insurers to cover the cost of the test over time, Mason says.

Ms. Mason, it strikes me that there is a strong conflict of interest in your statements. The only way you convince insurance companies that covering the cost of your test is economically sound is to ensure them that the results of such testing will lead to the terminations of “medically expensive” children. So, to make your test worth it’s cost, your genetic counselors need to help doctors communicate to pregnant women that they should abort their babies with Ds.

It is beyond unethical for these companies to hire people to “help” doctors communicate with their patients. That kind of manipulation for financial gain should be illegal. I am pro-choice but to me that means a completely informed choice not a “choice” pressured by a doctor pressured by a genetic counselor hired by a company making billions off the whole scheme.

Don’t go running to invest your money quite yet as Timmerman goes on to write,

There are a million things that could sink the endeavor, whether it’s competition, litigation, insurance resistance, or physician skepticism. There’s even potential for political and moral debates to sidetrack the company, as people argue over whether it’s ethical to use this kind of information to potentially abort a fetus.

While it might be ethical to use information about your fetus to decide if you want to continue the pregnancy, it is not ethical to insinuate that people with Down syndrome are too expensive to allow them their lives.

What else is not ethical? The constant articles dredging up (in a positive way, you know, with the intent of putting them to rest) old statistics, stereotypes, labels, and fears that serve to reiterate a negativity around Down syndrome.

And what I view as most unethical is a doctor or diagnostics professional not sharing the readily available information that gives a woman the freedom to research and educate herself about the baby she is carrying and what its life might be like.

Sadly, Mason does not seem to let ethics get in the way of money making,

She sounds deeply determined to get this one right. “This is about execution, execution, execution,” she says.

Yeah, Mason you got that right.

So here is my question readers, should companies like Verinata and Sequenom be required to share the results of their "economic impact" studies and the genetic counselors' coaching plans that will be used to "help doctors communicate with patients" with the general public?

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In case you don't have time to read the article, here is my "favorite" comment on it so far. I wonder exactly what "it" is that he wants people to think about.

I reckon the biotech segment is pretty hot right now. Why is this guy not writing the article about Sequenom? Really…..Think about it………….$$$$$

Curebie

Curebie... I had never heard that insult before. A blogger I read, Jo Ashline who tells it like she feels it over at “A Sweet Dose of the Truth,” apparently pissed off a bunch of people and got herself labeled as a curebie (as well as a whole bunch of other things).

I guess she earned this by getting all excited that her kid (nine years old with Autism) read his first word, and she yelled out something celebra-trashy along the lines of “Autism can suck it!” Once I started reading the comments and ensuing posts, connected posts, and rebuking posts, I realized that the Autism community is fractured much like the Ds community.

A couple years ago I wrote a post questioning whether or not I would get the “cure” for my daughter if one became available. The answer turned out to be a solid maybe.

Kimani was just nine months old when I wrote that post. Now three years later, I have a different answer. A resounding “Heck yeah!” (as long as it didn’t come with risks... I don’t take risks with Kimani, I just don’t.)

Does that mean that I don’t love her or accept her? No, it means I can separate the effects of an extra 21st chromosome from the other 46. I don’t see a possible cure as something that would be a magical re-do where Kimani swallows a pill and wakes up with 46 chromosomes and an altered face. A “cure” would likely be something that ameliorates the day-to-day effects of that extra chromosome. Maybe it would take away the risk of Alzheimer’s and the inability to articulate speech and replace it with for twenty or so IQ points. That is why I support organizations like Down Syndrome Achieves that are advancing research, legislation, and education for people with Ds.

Does that mean I don’t view Down syndrome as a blessing? Yup, I don’t. I do, however, think of my daughters as blessings. You understand... I don’t see my daughters as Down syndrome, instead I see them as people who have some differences caused by Down syndrome. Some of those differences are quite endearing and valuable, and I consider myself fortunate to experience a close relationship with my girls. So while I have been blessed by the people in my life who have Down syndrome, I don’t think them having Ds in itself is a blessing.





You know what I would like a magic pill for? TBI... traumatic brain injury... the result of meningitis, or high fevers, or deep freezes. To all the pediatric neurologists out there, please please I beg you, make me a Curebie.

Boy Cookies

Winter break 2012 is over and four out of my five children go back to school tomorrow. Over dinner my husband asked the boys what was the best part of this vacation. What was the most fun?

They stared blankly across the table at us.

Clearly we didn’t go to Disneyland, or to the beach, or anywhere fun at all.

We parents made attempts to spark ideas for answers... “Remember you went to Daddy’s work for the day?”, “Remember you went for a ride in the van to go pick up the new t.v.?”, and oh thank God an actual event... “Remember the hockey game Daddy took the Gecko to?”

“Oh yeah, yeah... Dad’s work was awesome,” big smiles. Kids are so dang willing to love you.

Daddy’s work, a hockey game with Dad, going on a road trip with Dad. Mommy is feeling a little crappy right about now. Yes, I cooked for them, read with them, brushed their teeth and kissed their boo boos, but I didn’t DO anything at all to make the vacation special. Nothing. Nada.

A roll of Pilsbury Sugar Cookie dough, two squeezy bags of icing, and a bunch of sprinkles fixed it. Just like that (snap your fingers with me my friends) there is something great to remember about this school vacation.

I think they did a great job decorating their cookies. They look just like they should look. Forget those blogs where you see cookies made by girls... cookies that look too pretty to eat... Martha Stewart-style cookies. These are boy cookies!



They were very patient and did not whine excessively while I took photos of our grand sugar cookie production.



The girls were busy enjoying a bath during the cookie making adventure, but once Kimani was out she was very insistent about getting one. She said and signed cookie...



And when I gave her a piece of one, she proceeded to enjoy it in the most delightful way.



Yup, tomorrow morning they go back to school... tired, strung-out, with a cookie in each of their snack bags. And mommy and Autumn will be home alone with a big tray of cookies... um yum yum.

Pregnant Again

While pregnant for Kimani, I could hardly imagine having a baby girl. I already had two gorgeous boys which meant Legos (lots and lots of Legos), dinosaurs, and Hess trucks, and there was no dolly envy in my heart. But of course there was always that 50/50 chance, so on occasion I would try to picture what a girl made of half me and half him might look like. If my boys were any preview, she would be stunning.



And of course she would be healthy, and smart, and creative, and precocious.

Then at about 28 weeks along the picture changed and “stunning, healthy, smart, creative, and precocious” were all off the table. I prayed that the child would be a boy. There was not one ounce of me that could accept the destruction of that conceivably perfect baby girl.

After a fairly short labor and two excruciating pushes, a bright pink newborn with Down syndrome was lifted up from under the water and released into my waiting arms. In those first few seconds I forgot that I did not know if there was another Lego between those chubby thighs hidden under the surface of the birthing pool.

Down syndrome be damned, I was pretty excited to have a girl.

But I don’t want another one.

My friend Lisa is pregnant again. She is about my age and already has a gaggle of children, one of whom has Ds. This week she blogged about being pregnant again after having a baby with Down syndrome. I couldn’t wait to read her thoughts since she is notoriously reflective, honest, and bold.

She did not disappoint me...

“We learned that he had Down syndrome, and that was hard. Really, really hard. I grieved, I ranted, I wrung my hands, I shook my fists, and I cried myself out. And this tiny kernel began to gnaw at me: I wanted another baby. I wanted a do-over. Not that I didn’t love Finn – there wasn’t a single moment that I wasn’t consumed by how much I loved him, despite my grief over his diagnosis. I just couldn’t imagine that being my swan song in my long career of having babies.”

A do-over... huh... no way. I never even considered it. Not because I was afraid to have another baby with a genetic difference and not because almost everyone I know IRL would be critical of me for it. Nope, I would never want another baby for exactly the reason why in those moments of grief Lisa did want a do-over.

In my case, pregnant again might mean that a dream baby girl is born who would outshine Kimani. And that is a risk I would never take. In my heart, there can never be another girl to compare Kimani to. She reigns supreme.



(p.s. Four years after having Finnian, Lisa is pregnant again... and contrary to what that paragraph I lifted from her post suggests, it wasn't a planned do-over but rather a surprise "accident".)

The Doll

As cute as Kimani was climbing into the babydoll stroller, I had a feeling it would end badly. And sure enough after I took a whole slew of adorable photos, she decided to climb out. Before I could get to her she went head first, crashing to the floor. Oops.

Shallot Therapy

Faint lavender skins burst under polished blade
(heavy-handled, carbon-steel, razor-sharp friend)
releasing potent fragrance into the air,
provoking fraudulent tears.

Oil and butter sizzle in lustrous pan
(heavy-duty, stainless-steel, All-Clad ally)
awaiting crisp secret circles chopped to pieces,
Sing shallots, sing your delightful swan song.

Anonymous said...

The following is a response to my Question of Faith post. One of the best things about blogging is hearing other people’s thoughts on the things that matter to me.

"Leaving God out of this story entirely.... there is a human in the world by the name of Kimani and she may have to live her life more instinctually than thoughtfully, and you will be the observer. You will be the guide standing by to steer her life in some direction. She and you will be one in so many ways. If you had certain dreams and desires for the future of this child, they are changed.... so where do you look when you look into her future; into the mystery of her? Maybe someday you will see a grand purpose for her life on earth... maybe not, but there she is. She just is. Her hand is always in your hand. There is no explanation for Kimani. There is no explanation for love... love just is."

Anonymous has got me thinking about my dreams for Kimani.