No Means No: Pre-term Labor & Terbutaline
Wednesday, December 2, 2009 at 9:21PM 
My autistic son riding Chicago's CTA. He loves trains.Ten years ago when I had my first son, Autism wasn't in the news as much as it is today. The only example I'd ever really seen was Dustin Hoffman's version in the movie Rain Man. Autism felt a million miles away from me then.
Today, it's part of my every day life. At age two, my son began being evaluated for Autism while we were living in Norway -- I'd been concerned since he was one year-old, and before he'd had the MMR vaccination.
Now in fourth grade, my son PJ is a happy and sweet little boy, but will forever struggle with the challenges that come with Autism. Most of his days are spent in his own little world, looking at the rest of us like we're from another planet. Even the simple thought of a typical birthday party can sometimes overwhelm him. He will need help for the rest of his life.
Pre-term Labor & Terbutaline
Me pregnant with my 3rd, my son PJ, and my mom Cathy. Bonus advice: resist the urge to chop your hair off when pregnant, it never ends well.Terbutaline is a beta 2 adrenergic agonist drug -- which means that it treats asthma symptoms. Of course, the U.S. Air Force doctor who injected me with it during pre-term labor with PJ didn't tell me that. She said it was a drug to help prevent early labor. Then, when it didn't work, she injected me with it again -- an act which caused the nurse at the time to be surprised (apparently she'd never seen them inject women with it twice). Neither did the dear 'ol doc tell me that prescribing Terbutaline for pre-term labor is an off-label, non FDA-approved usage of that drug.
Today Johns Hopkins published a new study in December 2009's issue of the American Journal of Obstetrics & Gynecology, saying that asthma medicines (the generic Terbutaline being one of the most common) used on fetuses is linked to increasing the chance of Autism. Researchers at John's Hopkins had previously speculated this might be true.
To sum up in extreme layman's terms: Children with a certain gene present could have their brains become Autistic when asthma medications are used on them as fetuses. And you won't know whether they were affected until it's too late.
If I'd only known then what I know now, I would have said no. I would never have let the doctor inject my pregnant body with a toxic substance. And when one says no to a medical professional -- no means no. I am the one who is responsible for my health, and that of my child, not only the doctor. Over the years -- and perhaps partly because of this experience -- I've learned to have bigger balls and advocate more strongly for my kids in the U.S. healthcare system.
In fact, I had already decided not to have an epidural or any other pain medications during labor because I was worried they'd someday find those drugs were harmful to fetuses. But somehow I knew, even then, that I shouldn't have let them give me Terbutaline. And that's how I remember it all so well.
It's that little instinctive voice inside you that says, "hmmm, not really sure about that." At very least I could've asked more questions about the drug. But the doctor was the one who went to medical school -- and I was having contractions. A friend of mine had recently been injected with it during her pre-term labor and seemed fine. I was young. I felt intimidated, helpless, and not at the top of my game.
Unfortunately, right now, somewhere in the United States, a woman is being injected with Terbutaline to prevent early labor -- it's still the "go-to" method, and quite common practice.
A Birth Plan and A Pre-Term Labor Plan
If I had it to do all over again, I would not only have written a birth plan -- which I did, as even in the 90s they had become popular -- I would have also written a pre-term labor plan. It would include things about medications, like:
- Use only drugs as approved by the FDA for treatment of pre-term labor.
- Inform me of the drug, it's normal usage, and the how the dosage will affect the fetus before administering any medicines.
- Ask if my partner (or family member) or I have any further questions before administering any drugs.
- If I, or my designated partner, says no to any particular drug: no means no.
I would encourage any pregnant woman, someone with a loved one who is expecting, or anyone planning to have children soon, to come up with a backup plan in case you go into early labor. It's something you won't regret doing, but I can guarantee you, not having one is something you could regret -- just as I do.
Kim Mance tagged asd, autism, autism spectrum disorders, birth plan, breaking news, johns hopkins, kids, link to autism, pregnancy, pregnant, risks, study in free thought, love came with kids, news, the fam | Permalink
Reader Comments (17)
Wow, Kim. Thanks for sharing this. I'd never thought of a birth plan. I will definitely make sure I have one, when and if I ever get pregnant.
I too cried (after I read your post) as I remember all too well the day you called me to ask me of I thought PJ could be autistic. However, he has been a blessing and your journey as a mother of a child with autism has been an encouragent and made SO MANY around you aware of what on the past was virtually an unknown! I know so much about Autism and the therapies and how to work with children with Autism all because of you! Thank you for sharing your experience!
I was injected with terbutaline at least twice, if not more while in pre-term labor last May. My daughter is now 18 mos. old, and seemingly healthy, but this was an eye-opener for me. Thank you for sharing!
Wow Kim - riveting to hear it was not FDA approved, not explained fully, not researched fully and on top of it, administered to you twice. You have tackled this situation heroically as a Mom from the beginning. So glad you were in Norway when you were. Sending hugs your way today...
Hi Kim-
As a father of 2 autistic boys, I can't tell you that it will be easy. I can tell you that that the effort and care you give to your son will be returned to you in small ways that you will value so much more than the average parent. Your eyes will be opened to the person he is, not the person he's supposed to be. I've made every mistake you can make with my boys. The big lesson learned is- they will tell you what they need- it's up to you to listen.
Having gone into pre-term labor at 23 1/2 weeks, I can attest that terbutaline is the only reason my son was born alive. If it hadn't been for terbutaline, he never would have made it to the 34 weeks I delivered him at. There are risks to every drug but the outcome allowed me to have a living child. I would far prefer a child with autism than no child at all.
Wow, what an inspiring and educational piece. I thank you for sharing such a personal and heart felt message! Thank you for making us aware! My husband and I are planning to have a family in 2010 and know that we already need help getting pregnant, so I am going to do a lot of research and try to find the best fertilitly doctors here in the DFW Real Estate area.
HI all, thanks for the comments.
@ Jim - Yes, now that my son is ten years-old I've been at this for a while too. And I think he is rockstar awesome. But I'd also hate to think he is limited in any way because a doctor thought it would be more convenient to use an unsafe drug rather than a more labor-intensive method. And I don't think that should continue happening to children.
@ Carly - I'm glad Terbutaline worked for you. But. I know that there are other drugs your doctor could have used that would also have worked. Terbutaline is by no means the only answer (Terbutaline didn't work for me *at all*, but another drug did). However, doctors are more reluctant to use safer drugs simply because Terbutaline works faster and doesn't take as much work or monitoring alongside its usage. It's a half-assed approach at best. Like ordering a pizza rather than cooking for a dinner party -- and similar to the reason they still routinely use the *barbaric* and unnecessary episiotomy during delivery. I hope in light of this very credible research, medical professionals will consider their oath, and start first with safer and more responsible options in the future rather than just going with what's most convenient for them.
To all: There ARE other options and more responsible ways your doctor should be caring for you rather than using the unsafe, non-FDA-approved for pre-term labor drug of Terbutaline. Period. I encourage you to talk to them about it ahead of time.
Hi,
Powerful information. I too have a 10 yr. old son with autism. Has anyone heard that using this medication for asthma increases the same likelyhoods? I had a very rough 1st trimester! I was unable to breath and was low oxygen levels. Trying to avoid medications when I could I ended up on stereoids inhaled and oral and using alot of the inhalers (terbutaline). I used them the most in the first 12-15 weeks and them felt better after towards the end. I know the first trimester is the crucial stage for development and I've always been suspecious of my oxygen levels and the medications.
This sickens me!
it is comfirmed that that the effort and care you give to your son will be returned to you in small ways that you will value so much more than the average parent. Your eyes will be opened to the person he is, not the person he's supposed to be.
I agree it was a prefect quick fix to my contractions at 23 weeks but now my son has had R.A.D. for 8 years of his life, has undergone surgery for a reproductive birth defect and now being tested for a heart condition. They didn't inject me once not 5 times, not even 10 times, how about ALOT more than that and the terbutaline pills I tool every 4 hours 24 hours a day from 23 weeks until my 9th month, and until I finally was induced with a 10lb 2 foot baby. Healthy, yes? Was I induced ~ yes. Did I know this was not approved ~ no.
If only more than 47 people would hear about this.
I am glad you are posting your experience. This will help a lot of women out there who are pregnant. But doctors and hospitals should be aware of this at this time. They should never ever use that kind of drug. It is quite scary if doctors are not aware of what it may cause. I hope a doctor or a hospital director will read this blog so that he/she may be aware of it and could spread the word among themselves.
God bless you and PJ.
Very informative post. Thanks for taking the time to share your view with us.
On this day and age of Autism Awareness, families need not cope alone with members who suffer from autism or developmental disabilities. There are support groups and non-profit organizations that can help.
Awesome! This information is so helpful. Thanks a lot.
Some great information to be absorbed in this post. Thanks!
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