We’re Not in Kansas Anymore…

Today I spent the day at the Clinic for Special Children in Strasburg, PA. The Clinic serves the Plain (Amish/Old Order Mennonite) populations of Lancaster County, PA and the surrounding counties, the state, the country and, actually- the world. The Clinic focuses on genetic disorders of the Plain communities- studying and finding solutions for their metabolic diseases and/or do the best they can to treat the illnesses and to gives these children healthy and full lives.

It’s good, worthy work.

So today the Clinic hosted a conference called ‘Routine Care for the High Risk Neonate’ for local midwifery providers. They specifically invited all midwives including CNMs, CPMs and ‘lay midwives’. It was a pretty amazing day right from the start.

Dr. Bayliss loving MANA Stats

As I stood in the registration line, my preceptor, Danielle, came in and started introducing me to the other midwives waiting to register. “Oh, this is Bonnie Gruenberg- she wrote the Birth Emergency Skills Training Handbook.” Uh, yep. I am a little star-struck. I’m standing here about to attend a conference with a midwife who LITERALLY wrote the book about OOH safety. (By the way, Bonnie is adorable. She’s elfin- tall, slender with long, thin blond hair. Beautiful and youthful. She likes horses, too.)

As we grabbed our seats, Danielle pointed out the midwives around the room- it was a ‘Who’s Who’ of Central PA midwifery. Many names I’d heard and hadn’t had a chance to actually meet just yet. And lots of Amish/Plain midwives as well- those solemn, strong women who keep their bonnets fastened securely to their tidy heads using straight pins gathered in twos and threes among the more modern midwives.

I learned a lot today- the focus of the conference was supporting OOH midwives to become a part of the system for collection of blood samples so babies can be tested for Plain-population specific genetic disorders as early as possible. The doctors were inviting us to be a part of the solution in our local community.

Here are some general highlights:

• Dr. Holmes Morton Medical Director of the Clinic (looking very snazzy with his bow tie) introduced the Clinic and their work. He highlighted how important midwives are in gathering vital information that can serve our clients well. I was amazed that this little clinic- actually hand-built by Amish craftsmen on land donated by a local farmer- actually does work that benefits families all over the world.
• Dr. Mitchell Kresch of Hershey Medical Center offered his services to hold NRP classes all over the state, wherever midwives want to have a class. He discussed the appropriate triage of compromised newborns, directing midwives to first call EMS and then to call his NICU directly (giving us the direct number) so his team can bring the helicopter to us or so they can meet the EMS service en route. Yep- Lancaster midwives now have direct access to helicopters to get hypoxic babies to care as soon as possible.
• Dr. Kevin Strauss of the Clinic discussed Newborn Screening and CMV disease which is not screened for even though it is WAY more common than other diseases that are routinely covered by that metabolic screening.
• The morning ended with a presentation by Dr. Kevin Lorah of Lancaster General Health who shared with us their Perinatal Palliative Care program. You can imagine, I was especially interested to learn about their program (looks excellent) and to tell him about bereavement doulas (he seemed intrigued about the continuity of care a doula can provide).
• After lunch, Dr Katie Williams shared about children with genetic disorders and immunization. I myself have ever been uncertain concerning vaccinations. I respect both the studies done about the safety and efficacy of vaccinations AND the first hand observations of parents who SEE their children damaged by them. And for the FIRST TIME in my experience- doctors were willing to discuss the specific concerns of the ‘anti-vax’ers. Not a snide comment about Jenny McCarthy to be heard, they were respectful and open about what they see as the particular benefits of vaccination for children with genetic disorders AND the admitted (albeit small) risks of vaccinations to all children. Still on the fence, but I can really appreciate their perspective.
• Dr. Phillip Bayless actually made me write “I (heart) him” to the midwife sitting next to me. Bayliss wanted to discuss standards for risking clients out to homebirth. He began by acknowledging the deep divide that exists between ACOG/SMFM/AAFP and those of us who practice OOH birth and then… he basically dismissed all the professional associations as playing politics. (GASP!!) He pointed out that ACOG strongly promotes VBAC (although the average OB is still NOT following that recommendation) but VBAC remains far more ‘risky’ than OOH birth. He thinks it’s a game. And then he said, “I strongly believe in home birth. But I abhor recklessness.” I can totally respect that!  He spoke of the Wax study- Wax who is a personal friend of his- and shared that the study has been soundly shown to be of poor quality. Then- AND THEN- he actually quoted the January 2014 MANA Stats study. Oh my goodness- my heart sang! Here was a doctor who was speaking my language! Finally, Bayliss discussed ultrasound and its value in discovering some of the genetic disorders the Clinic serves. He discussed certain fetal conditions that certainly should rule out an OOH birth (no argument from me- the things he offered are pretty serious). Interestingly, he also named several life-limiting conditions that would be SUPPORTED for OOH birth, like anencephaly.
• Dr. Erik Puffenberger of the Clinic then gave us specific direction concerning the collection of blood samples for genetic testing for clients and shared how this information is used to help patients.
• Finally, Dr. Devyani Chowdhury, Pediatric Cardiologist from Lancaster General Hospital, presented on pulse oximeters and gave us some clinical guidelines for seeking second opinons. Like the other physicians who presented, Dr. Chowdhury was a model of cooperation expressing interest in holding an oximeter workshop for midwives, helping to secure grant money for midwives to purchase necessary equipment and offering her direct number so anyone can call to consult anytime.

All about DNA

Are you as shocked as I was? The entire day felt… Collegial. Professional. Reciprocal. I feel like I’ve had a peek into what it must feel like to live in England or the Netherlands or Canada. Here we were, a room full of care providers of all levels of expertise (and little ‘ole me) and there seemed to be genuine interest in future collaboration. Not formal- gosh, I don’t think ANYONE would want that!- but a real acknowledgement that midwives and doctors both are a vital part of patient/client care. We each have expertise and specialties and we each have a role to play. The doctors seemed willing to train and the midwives seemed willing to learn.

And I can’t help but think the clients will be the ones to genuinely benefit. They’ll be the ones who get a heart defect detected faster, a genetic condition diagnosed sooner. Today was good for our clients.

I asked my preceptor if it’s naive to think things felt very collaborative in that room today- and although she walked out of there being the point person for the physician-led NRP classes for midwives, oximeter workshop with the pediatric cardiologist and for an EMS training event concerning midwives, she said it is naive. She said it’s unlikely these physicians would show such enthusiastic support for OOH birth in the hospital as they did today at the conference.

Ah well. I’ll take it. I’ll take today and will dream with it.