Sunday, June 9, 2013

My Jenny McCarthy Moment

Do little white pills cause autism spectrum disorders?
Wanting simple answers to complex problems

On a sunny Sunday morning, as I tried to ignore the sad news of the latest mass shooting in Santa Monica (near my former home), I tunneled through the perpendicular worlds of scholar.google.com (peer-reviewed, fact-based) and google.com (popular, fear-based). I was researching a drug called terbutaline, also known as brethine, an asthma medication that has long been used off-label to stop contractions in pre-term pregnant women.

In 1999, I was one of those women. And until a few days ago, I had never given terbutaline another thought. But while speaking with another mom of a son with developmental disabilities and mood disorders, my spine chilled and my ears started to ring when she said, “I was hospitalized for pre-term labor and given terbutaline.”

My contractions started after a long hike in my 29th week of Michael’s pregnancy. At first I thought they were just strong Braxton-Hicks, but when they wouldn’t stop, I ended up in the emergency room. I was given an injection, hospitalized for a few days, and sent home on bed rest with a bottle of little white pills.

What I remember most about the pills was the breathtakingly awful headaches and painful tremors they caused. I also remember feeling resentment toward the baby in my body, for making me endure so much pain. In the end, he was born on his due date—and he was the happiest, sweetest baby a mother could ask for.

And now, 13 years later, Michael is still happy and sweet—except when he isn’t. He can’t tie his shoes or remember to brush his teeth. He walks with an awkward gait and has serious sensory integration issues. His most recent diagnoses include PDD-NOS and juvenile bipolar disorder.

Which is where Ms. McCarthy comes in. I have a great deal of sympathy for Jenny McCarthy. Any parent whose child is diagnosed with a life-changing condition, whether it’s cancer or juvenile diabetes or autism, wants to know why. What happened to cause this? Why did this happen to my child?

After her son was diagnosed with autism in 2005, McCarthy famously latched on to a 1998 Lancet study that incorrectly linked autism to vaccinations. That controversial study, which followed 12 children diagnosed with developmental disabilities, has now been retracted; there is no sound scientific evidence linking vaccinations, even those containing thimerosol, to autism.
   
Even though I have sympathy for McCarthy, I routinely assign the autism/vaccination controversy to my students as a critical thinking exercise in learning how easy it is to latch on to an “easy” but often wrong answer. As that wit H.L.Mencken famously said, “There is always a well-known solution to every human problem — neat, plausible, and wrong.” 

So as I scour Google Scholar for recent articles about terbutaline and autism, I have to ask myself: am I pulling a McCarthy? Do I want this one thing to be the answer, to the exclusion of all other possible things? Do I need an easy answer?

To be fair, the FDA has taken recent studies linking terbutaline to possible developmental delays seriously, issuing a Black Box warning for the drug in 2011: “Terbutaline should not be used to stop or prevent premature labor in pregnant women, especially in women who are not in a hospital. Terbutaline has caused serious side effects in newborns whose mothers took the medication to stop or prevent labor.”

I find myself inevitably drawn to comparisons with Thalidomide, the infamous 1960s drug prescribed off-label for morning sickness that caused thousands of teratogenic birth defects worldwide. Thalidomide was one of the first drugs to provide solid, irrefutable evidence that substances ingested by the mother can cross the placenta and cause harm to the developing fetus. 

If the link between terbutaline and autism is substantiated, then the comparison to thalidomide is an apt one.

In today’s paper, the front page story (right below the Santa Monica shooting) featured a young man headed off to UCLA at the age of 14—a bright, promising chess player with true gifts in math and science.  My son Michael attended the same exclusive magnet school until he was asked to leave because his behavioral problems were too distracting to the other students.

Would that story have been about my son, if only I had refused to take terbutaline?

Simple answers are usually wrong. In the end, the question comes down to a philosophical one: free will or determinism.  Genes, environment, nutrition, medication—all these must certainly play a role in developmental disorders. But they don’t determine the outcome of our lives. Michael still has choices, and good options, which will only improve with ongoing research and changes in society’s current understanding of mental illness and mental disorders.

Thalidomide babies were often born without limbs, or with phocomelia (“Seal limbs”). But that very visible disability didn’t stop Mat Fraser from becoming a drummer, or Tony Melendez from playing the guitar (with his feet), or Thomas Quasthoff from singing his heart out.

Michael’s disability is less visible, but no more deterministic. He too can be what he wants to be. The path just might be longer and more roundabout than I expected that summer morning, when my hike triggered early contractions that set my son’s life—and my life—on this path.

12 comments:

Just Words On A Page said...

Wow. I so get what you are saying. I myself am a DES ( Diethylstilbestrol) daughter and my own kid is Autistic with a pretty significant sensory disorder. Having my son took lots of fertility treatments due to the whole DES thing.

I wondered for years if my treatment somehow caused his autism. We spaced the vaccines out- we didn't use vaccines with preservatives.

From everything I have read and researched about my son's dx is that ASD has some sort of of genetic component. It runs In families even though we don't know for sure what causes it.

I for a long time tried to blame ASD on one specific thing but I couldn't.

Hang in,

Cheryl Carlson said...

My1990 born Aspie was my 4th pregnancy. I am high risk OB nurse so of course..was told must take Prednisone for antibodies but I waited til US showed his face well developed.Then the contractions started at 11 wks shortening the dilating cervix. Terbutaline every 4 hrs was started then 12wks the cerclage.I got off it at 32wks when I started MgSO4 in the hospital for 10 days. Contractions continued even when breathing and swallowing were nearly wiped out.Then of course I had the Betamethasone twice.
My son says I took a calculated risk without which he would have not survived. His forgiveness is absolutely humbling.
I have long wanted a study done to see if stage in pregnancy and use of Terb changed the outcomes as well as if pump delivered steady state was more dangerous than the rise and fall of oral doses.
I envy those who never worry,make choices that carry consequences but somehow skate home free. Just not remotely happening to me.sigh.

Unknown said...

Is it even scientifically "proven" that your hike triggered the premature contractions? I know and have heard of plenty of women who worked and worked out until the day before a full-term birth.

I like your comment about how mothers search for the reasons why, why my child, how, for what reason. It applies to moms the world over. It must reveal something about human nature, and makes me wonder how "moms" of other species "think" or "feel" about their offspring. I have a friend who raises chickens. What are they thinking?!

Annie said...

Dear Anarchist,
My son was just like Michael. We tried EVERYTHING.
Then we found clozapine. It has literally been a miracle drug for us. Our son turned from an ax murderer into a straight A kid: polite, self-controlled, happy. Write to me and I'll tell you our story. I'm a former newspaper editor.

GALJohnson said...

I read your blog post right after the NewTown shootings, and very much enjoyed hearing you and your son on NPR this morning! You may well be familiar with Dr. Ralph Ankeman's work with violent chldren, but if you haven't you might check it out. Don't know if it would be helpful or not. I have a daughter who seems to me to be similar to your son. She is now 13 and seems to be growing out of it, or maybe just learning to handle it. She still gets mad, but she nearly always stops herself right away and apologizes. No more trying to hit or throwing chairs, thank goodness. Listening to your son this morning he sounds like a truly wonderful young man. Blessing to you!

Chris from CT said...

I wish you were more accessible for give and take on Facebook .. .. .. I would like to share some similar experiences with you in the realm of Children's Mental Health

Annie said...

Hi,
I'm afraid I don't know anything about Facebook. I have a page, but I don't use it. I do answer email, though!

Chris from CT said...

Perhaps I need to apologize; I thought you were this person on Facebook:

https://www.facebook.com/liza.long.90?fref=ts&ref=br_tf

A post caught my attention that went up only a couple of hours ago - and with my long, long history in children's mental health issues; I was jumping at the chance to communicate with the person who's FB page that is

Susan Foley said...

My third child, a son, was born at full term. I didn't take any medications while pregnant.

He is bipolar, ASD and the Lord alone knows what else. He has as many diagnoses as he has had doctors.

Sometimes things like this just happen. Until someone does something scientifically rigorous I wouldn't pin much of anything on fertility treatments, vaccines (that has been disproven), terbutaline or any other single-shot, easy answer.

"If only we would stop using [villain drug of the moment] all babies would be born 'perfect' (whatever that means)."

Untrue.

Beth Shelby said...

I was put on Terb pump at 27 weeks for preterm labor continually until 35 weeks. He was born at 37 weeks. I also had 2 magnesium washes. I always wondered if any side effects came from this. We have struggled with behavior since he was an infant. Now in 5th grade we are seeking help through meds. Doctors appt tomorrow. Used to be just behavior issues. He will go into a "drunk" behavior. That's the only way I can explain it. Glassy eyes and no matter how much we try to reason with him to calm down we can't until he gets off this high. It has now affected his self esteem and grades. I was also hiking in New Mexico only to come back to Florida in labor. You wrote this a few years back. Just curious if you ever got any more info linking all of this together. Your words hit me when you said "he is sweet until he is not" I completely understand. Thanks.

Anarchist Mom said...

Beth, we got a juvenile bipolar diagnosis in 2013, and it changed everything for my son and our family. I recommend reading more here: www.jbrf.org. If it feels right, find me on Facebook, and I will do my best to connect you with people who can help. Since his diagnosis (and starting lithium), my son has not had any violent outbursts or threats of harm to self or others. Bipolar is still a difficult diagnosis. But now that his moods are more stable, we have been able to work on the other challenges he faces. He is an amazing kid, and I am so proud of how hard he works!

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