Guinea pigs (AKA Effin’ Doctors)

In 2009, I contracted Lyme disease. I don’t even know how, as we were living in urban Frederick at the time. I had a fever and some muscle aches and then noticed a bull’s-eye rash on my back.

I found a specialist, and thus was my rude introduction to the controversial, little understood world of Lyme disease. It often goes undiagnosed because titers can yield false negatives, and some doctors don’t believe it remains in the body long-term. The medical community is split down the middle on how to diagnose and treat it.

I recovered quickly; I was one of the fortunate ones. Some people suffer debilitating symptoms for the rest of their lives (if you believe the Lyme activists).

In 2013, Zoe was born. Right away, I had problems with breastfeeding. It was excruciating, even though it’s not supposed to be, and it soon became clear that Zoe wasn’t getting enough to eat. The lactation consultants at my hospital weren’t much help. The pediatrician was no help; she just told me to supplement with formula. The pain eventually got better but for months I struggled with low supply. I fell into a mild depression. All I wanted to do was feed my baby like so many other moms could seemingly do effortlessly.

After about six months I was doing some research online and stumbled upon my tribe: a whole host of other mothers, also struggling with low supply. And for all kinds of reasons: thyroid disease, PCOS, hormonal imbalances, something called insufficient glandular tissue. These sisters had taken it upon themselves to educate and help each other because here again, the medical community is not much help. Many lactation consultants dismiss low supply; they just tell new moms that as long as you’re feeding baby often enough, you won’t have a supply problem. (Yeah, tell that to the moms who are taking fenugreek until they smell like maple sugar, feeding baby around the clock, pumping after every feed, drinking lactation tea and a gallon of water every day, eating oatmeal at every breakfast, and still not producing enough.) As far as doctors go, it’s hard to find ones who will do the tests to help you figure out which underlying medical issue you might have. And pediatricians are the worst; most of them don’t lift a finger to help mom figure out what might be the problem and instead just push formula.

With the help of my newfound community, I located a new lactation consultant. She came  to our house, heard my story, watched Zoe nurse, and sent us to a pediatric dentist to have her tongue and lip ties revised. Yes, it turns out that a tongue tie is actually a thing. And tongue and lip ties can interfere with breastfeeding, make it painful, and cause milk supply to never be fully established because the baby cannot feed properly.

Guess what? Tongue and lip ties are not fully understood or recognized by the medical community, and there’s disagreement and confusion about diagnosis and treatment. Many doctors and lactation consultants will look in the mouth of a clearly compromised baby and declare there to be no ties. I belong to tongue tie support groups and have seen some of the pictures and just shake my head at how the diagnosis could be missed. Then these poor moms have to drive around to all these different dentists and ENTs before they find one who will actually listen to them.

How to treat tongue ties is a whole other question. Some do it with laser and some surgically. Some recommend chiropractic and cranial sac therapy as aftercare while others just send moms home with instructions for some simple stretches.

We had Zoe’s ties revised and nursing got better but I think they grew back, and by then it was way too late to do anything about my supply. Zoe had started solids at that point anyway and it mattered less and less as time went by. I ended up nursing her for 20 months, which I was really proud of because it was so, so hard for a long time.

Now, we come to Luke’s stillbirth. It turns out that stillbirths are—wait for it—poorly understood by the medical community. Apparently your full-term baby can just up and die inside of you after an otherwise normal pregnancy, and the doctors have absolutely no clue as to why. And kick counts, one of the few things that could actually possibly prevent a stillbirth, are—you guessed it!—controversial. Are you sensing a theme here? In the U.S., the Count the Kicks campaign says that third trimester babies should kick or move at least 10 times every two hours. Over in the U.K., the Count the Kicks campaign says frequency and pattern of movement is unique to each baby and as long as your baby is doing what is “normal” for her, you should be fine. Meanwhile, my eight-month-pregnant friend’s doctor told her, “We don’t really tell people to do kick counts anymore.”

By this point I’ve pretty much given up on the medical community. You have to work so hard to seek out professionals you can really trust, who a) you’re confident they know what they’re doing; b) if they don’t, will go to the ends of the earth to look for an answer; and c) will listen to you and not roll their eyes when you show them something you found online or in a book.

My grief counselor told me that Luke’s life is not meaningless because he taught us things, brought us gifts. The gift of empathy, of living in the moment. And for me, the gift of learning to speak up for myself. Through all of these experiences I was never really a self-advocate. I just listened to what the professionals had to say and took it at face value, often without really understanding. This tragedy has changed all that. I will speak and speak until they listen and if they don’t listen, I will go somewhere else and find someone who does. That’s Luke’s gift to me.

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