Recently, I wrote about the evidence for erythromycin ointment in newborns. In my review of the evidence, I found that erythromycin is used to prevent eye infections that are caused by sexually transmitted diseases– chlamydia and gonorrhea. There are several evidence-based alternatives to erythromycin– including prenatal screening for chlamydia and gonorrhea. However, both Canada and many states in the U.S. mandate the use of erythromycin, and some health care providers will threaten to call Child Protective Services if parents refuse to have the ointment administered.
Jodilyn Owen is a doula (now midwife) who was involved involved in changing the mandatory erythromycin rule in Washington State. I was intrigued by how she did this—how does a doula become involved in changing policies to reflect evidence-based practice? Why do care providers threaten to call Child Protective Services? Today, Jodilyn is going to share her testimonial about how she changed the mandatory erythromycin rule, and what she learned from her experience.
Tell us a little bit about yourself.
I have worked in the birth and early parenting world as a doula, educator, and parenting center director since 2001. I am currently a Certified Professional Midwife (CPM) but I do not practice midwifery in Washington State as I am waiting for my license. I am co-author of the upcoming book, The Essential Homebirth Guide: A book for parents planning or considering a homebirth (Simon and Schuster, coming out in February 2013). I love working with parents as they get to know their newborns and am certified in Newborn Observation by the Brazelton Institute. My passion was never hospital births or homebirths, though I have attended hundreds of each—my passion has always been mothers and babies: supporting them in their journey and helping parents gather resources and information as they make their way forward.
What inspired you to work on changing the erythromycin law in Washington State?
My inspiration was a family that had a massive blow-out with a provider they had grown to love. Towards the end of the pregnancy, they let her know that they would be refusing erythromycin for their newborn and why. She told them in no uncertain terms that they were putting her license at risk, that Child Protective Services (CPS) would have to be called, and that they were putting their child at risk for blindness.
Prior to this experience I had witnessed dozens and dozens of “informed consents” about this treatment in a variety of settings. I never heard the same explanation twice! Everyone was confused about the law and the erythromycin treatment. I just decided to get to the bottom of it—urgently so that this family would understand the issues at hand, and long term so that I could grasp what it all really meant and speak from an educated place.
I had often done “recon” work for my dad when I worked for him in high school—gathering information about his competitors and generally acting like a teenage 007. This experience gave me the foundation for my research skills. Knowing which questions to ask and who to ask helped me as I began to slog through the mud of this issue.
How did you go about helping change the law? How long did it take?
If you told me when I first began to ask questions that it would take two years and discussions with people all over the state, country, and world to change 2 sentences in our code, I would have laughed in your face! I have a long history of accomplishing what I set out to accomplish, so I was surprised at my first real interaction with government bureaucracy. It really was as bad as “60 Minutes” says it is.
When a law is passed by the federal or state government, individual departments write “rules” or “codes” to fill in the details of the law. In Washington State, these rules are called Washington Administrative Codes (WAC). The actual law about the use of erythromycin actually worked really well. It was the language of the code that was so confusing. The Washington State code about erythromycin is just one in the chapter that addresses all aspects of provider’s responsibilities regarding sexually transmitted diseases. At the time, when I began to look into this, the code had not been updated since 1981.
At that time, the details were written in a way that understandably led providers to believe that they would be held financially responsible if they did not install the ointment and an infection or blindness occurred. This is why care providers would call CPS when parents refused it—to protect themselves from a future lawsuit. When I read the code as it existed, I couldn’t really blame them. But the intention of the original law was clear, and that gave me a lot to work with.
I called a variety of agencies and insisted on speaking to the top-dog. I spoke with CPS who told me that when they receive these complaints, they basically go into a box in a closet where no one ever sees them. The exception to this rule is if there are further sentences which indicate potential harm such as, “These parents refuse to let me put this medication in their newborn’s eyes and they are on crack-cocaine or the father is regularly hitting the mother.”
I spoke extensively with the Department of Health and finally got in touch with the woman who was responsible for making sure that our state rules work for providers. I spoke with professionals in other states, researches in this and other countries, and even the pharmaceutical company who makes the medication. I kept copious notes in an easy to read format so that I could easily share them with others.
As the months wore on I reminded myself often why the work mattered so much to me. I never apologized for seeking information or working to affect change. I knew this medication was not always benign and that parents should be able to enact their right to refuse it when appropriate. As I attended births over those months and saw the confusion over this rule amongst providers, my resolve was strengthened. My contact at the Department of Health took everything I brought her and built a case for her superiors and the committee they worked with that this rule needed to be rewritten.
In the end, parents had the right to refuse this treatment on behalf of their newborn all along. All I did was work with a Department of Health employee to rewrite the code language to reflect this. We took it to a committee meeting, where I presented it in front of a couple dozen members, including OBs, Midwives, hospital and insurance representatives, and state employees. They asked some questions, which I answered, and they approved the wording that is now on the books. It was then several months before it was put into practice. I requested that the department of health notify all hospitals and birth centers and the professional associations of providers that work with newborns. They did.
I was like a preening chicken the first time that I was at a hospital birth where the nurse announced that they had a new form for parents to sign regarding this treatment. I saw my words printed on it, in clear and easy to understand terms. It was worth the wait. No more painful arguments in the first moments after birth, the nurses were happy and the parents felt heard and understood. As a doula I was thrilled—it was an exponential improvement for babies and their families.
The final wording of the code rule allows parents to refuse this medication on behalf of their newborns. It also clearly tells providers what to do so that they are protected if parents refuse this treatment.
In addition to the clearer language, I was able to include an allowance that stretches the length of time from birth that a provider has to use this medication from one hour to two hours. I had tried for four hours because the medication instructions allow for that long, but the committee members did not want to stretch it past the normal time that mothers are in recovery before being moved to postpartum care.
The final code reads:
“Health care providers shall: Instill a prophylactic ophthalmic agent into both eyes of the newborn as prophylaxis against ophthalmia neonatorum up to two hours after the delivery, whether the delivery occurred vaginally or by Cesarean section. Acceptable ophthalmic prophylactic agents are application of erythromycin or tetracycline. In the event the U.S. Food and Drug Administration declares a shortage of these prophylactic ophthalmic agents health care providers may substitute alternative prophylactic ophthalmic agents recommended by the Centers for Disease Control and Prevention. If the newborn’s parent(s) or legal guardian refuses this procedure, the health care provider will document the refusal in the newborn’s medical record.”
I want to be clear that I don’t believe that every family should opt out of this treatment—my work in this area was not about that. There are really legitimate uses for this medication. I do believe that families deserve actual information—not so that they will consent—but so that they can make informed, educated choices about the care their baby receives. Parents have to make these kinds of decisions over and over again throughout the first eighteen years of their child’s life. We need to model, during pregnancy and the early postpartum time, what it means to really investigate and purposefully decide.
After you wrote your article, parents contacted you from all over the world about their experiences with erythromycin. What did you learn from this?
After I had done my research, and upon realizing that the process of making a change would take much longer than anticipated, I wrote a paper to explain the history, use, and rules regarding eye prophylaxis in Washington state. I put the paper on my website and encouraged my doula colleagues to share it with their clients. The paper got a lot of hits which brought it to the top of search engines and I did hear from people all over the world. (Read Jodilyn’s paper).
Interestingly, in the United States, in almost every situation, it was fathers who contacted me. They were usually told that their baby needed to have this medication because a father who had an affair may have exposed his wife to Gonorrhea or Chlamydia. On the whole, the fathers who contacted me were distraught when they called. They were upset by this suggestion, and they felt bullied and threatened into accepting a treatment they did not want. The threats made in other states echo those made here: that CPS would be called, that they were putting their provider at risk for liability, lawsuits and professional misconduct, and that they were breaking the law and endangering their child.
So much of pregnancy is out of range for fathers—they can’t fix it or make it better or do it for their partners. But they can protect them from accusations of bad mothering and threats of jail time or massive fines. And they can protect them from providers who refuse to work with them if they continue on with their desire to make decisions about which medications their baby will receive.
I often just listen to their stories and we wind up spending more than an hour and sometimes several hours over several days talking through options and potential pathways. For me, this is about bringing fathers into the pregnancy and birth and early fathering experience in an active and healthy way. It is about letting them explore their new-found father voices and providing tools to create good outcomes for their family and meaningful change in their community. We are all citizens and we all have the right to participate in our political system.
I am thrilled when I hear from parents who don’t want to give up their rights, even if it means ruffling some feathers. It is meaningful to create change from the consumer end instead of waiting around for the big-wigs to figure out how to create best practice out of good science. Hospital administration and policy making are slow moving machines—meanwhile families are dealing with this and other issues like it every day, so why not move what we can forward?
Povidone iodine is an alternative to erythromycin that is not available in the U.S. What did you learn when you looked into the option of povidone iodine?
This is a complicated issue—but to over simplify it I would say that there is a gentler, more effective agent called povidone iodine that is in use all over the world. (You can read more about it here) The U.S. Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) are highly influenced by well-funded lobbyists who represent big pharmaceutical companies. The FDA and the CDC need the pharmaceutical companies to fund both the local clinical trials and the packaging of medications in order to consider approving them for use. These pharmaceutical companies made it clear to U.S. scientists that they would not fund the use of povidone iodine in America, because this drug would not be profitable enough.
Our system is broken and twisted and relies on financial gain instead of following good science into best practice. The story of povidone iodine illustrates the depth of this problem. Meanwhile, povidone iodine is used all over the world and has reduced the rate of blindness in developing countries, which is great news.
What advice would you give to parents who would like to refuse the erythromycin ointment?
I encourage parents to gather the facts about what this treatment does and does not do, and find out how it affects newborn babies and their mothers. Have a frank discussion between partners about sexual history and activity so that you have all of the information you need to make a good decision.
If you decide to use erythromycin, push it off until after the first hour and as far into the second hour as possible. Those first moments are a time of intense coming together for mother and for baby and indeed for the whole family. It is a multi-sensory experience. Smell your baby, gaze into her eyes, hold her so that her skin touches yours, and breathe slowly. This is sacred space in my opinion, and it should only be invaded for procedures which are life-saving, such as a mother who is bleeding too much. Finding out his weight, sharing pictures with family and friends, inviting visitors into the room, or giving him that eye medication can wait.
In the first hours after birth the hormones that pulse through your body are designed to help you get to know each other and form those initial impressions and bonds which will carry you through your early parenting experience. It is not about all or nothing—it is about finding a balance that honors the built-in design that attaches us to our young, while providing the best individualized care for each family.
Jodilyn’s work has helped parents in Washington so that their choices to use or not use erythromycin are now based on informed medical decision making, instead of coercion or fear. Thank you, Jodilyn, for sharing your experience with us!
Do you have any thoughts or questions for Jodilyn? Please feel free to leave them in the comments below.
You can also reach her at EssentialBirthandFamily [at] Gmail [dot com].
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For a sample “baby plan” that includes declining the ointment, click here.