Rare vs Underdiagnosed

I was thinking about this recently in terms of high loss of blood during childbirth causing pituitary infarction or Sheehan’s Syndrome. What I’ve read about this indicates this is a rare occurrence. However, I’ve talked to various women who had traumatic high blood loss labours, and despite pumping to stimulate supply, often for weeks, never produced a drop of milk. According to the article this certainly is a major symptom of minor Sheehan’s Syndrome. Yet, absolutely none of the women I’ve talked to were ever told that blood loss could cause breastfeeding issues. None of them had blood work, MRIs to examine the pituitary, nothing. All were more or less left to their own devices when lactation failed. Which is something that irritates me to no end. Just because there is something that can feed a baby shouldn’t mean that investigation into why the normal method isn’t working is unnecessary. But that’s not the point of this article. The point here is that, how rare are things really when no diagnoses or investigation is done? Is the rare diagnosis a historical artifact (I did find a paper on incidence rates from 1960-when there were significantly less c-sections or early inductions of labour)? I know research papers are written examining a portion of a population who volunteered, but surely these things vary by hospital, genetic makeup of the population and other factors?

This article states that mammary hypoplasia (insufficient glandular tissue) is about 0.1% of the population. So 1 out of 1000 women. I’m not sure if I’m happy with that statistic, but let’s just take that into consideration. That is similar to the number of babies born with Down’s Syndrome.  That doesn’t seem so rare to me. Unusual perhaps. But since the only way this condition is manifesting is appearance of the breasts and lack of milk (two relatively hidden things) I’m sure the diagnosis rate is much lower. I have no idea if this might be partly my issue because no one checked. How many other women have similar stories? I know the ‘oh I didn’t make enough milk’ is often a screen for being uneducated about what breastfeeding –and babies–can be like, not to mention a bugbear of the ‘oh not enough milk is sooo rare’ crowd, but how can we really know when so little investigation is done? What about some semi-realistic numbers?

So what about PCOS (Polycystic Ovarian Syndrome)? Reported rates of this vary wildly. I’ve read 10% of women have it, but 50% show signs of it in the US. Yikes. Let’s stick with that 10% figure. So of that 10% a survey of PCOS sufferers indicated a 25-30% have milk supply issues resulting from either poor breast development in puberty or in pregnancy. So there’s another potential 2-3%. How does that mesh with the breast hypoplasia figures? It would seem that these would be in addition to, or rather, the previous figures for hypoplasia might be hypoplasia of unexplained origin, e.g. not obviously PCOS related.

Now, another cause of lactation issues, thyroid issues has a range of percentages and causes. Let’s pick them apart. Hashimoto’s (autoimmune hypothyroid) is in the range of 1 to 1.5 per 1000 with around 20% of sufferers experiencing lactation issues. Graves Disease (hyperthyroid) effects up to 2% of women. That’s 2:100. Postpartum Thyroidosis effects 5 to 10% of women. Onset is usually around eight weeks to four months postpartum and with not much information on the effects on lactation it anyone’s guess as to how many women. Now, information on the effects of non-autoimmune thyroid issues on lactation is very sparse here so we’re certainly wandering into under-diagnosed territory. Overall thyroid issues are more common, but there is little information on their effect on lactation. This article certainly seems to indicate that lowered milk production is a possible side effect. How many though? What if it was something similar to 20% of thyroid issue sufferers can expect milk production or release issues, like expected for those suffering Hashimoto’s? That would put the numbers at a possible 1%. Of the potentially 5% suffering from thyroid problems, 20% with lactation issues. This is just a hypothesis of course, but it seems a reasonable assumption at first look.

Tongue ties are certainly in the under diagnosed camp. We only got a cursory look in my daughter’s mouth and from the forums and message boards I frequent I see so many of the more ‘typical’ signs of tongue tie described and mothers often turned away by their health care providers who are unable to diagnose the issue-or more frustratingly, unwilling to treat it. Even anterior tongue ties, which should be dead easy to spot, are under diagnosed. Posterior tongue ties, being more hidden, have a more hidden rate. Some experts rate them as low as 0.2%.  I can’t believe that though. Southampton hospital in the UK found an incidence rate of around 10% for tongue ties. Ten percent! That is 1 out of every 10 babies. I’ve seen reference to the rate of tongue tie (and lip tie) being as high as 15%. Since it is genetic it will vary by population. US studies seem to rate it around 2-4% and worldwide the IATP estimates incidence around 4%. I’ve read some studies (this one in particular is amusing as it is refuted by the creator of the assessment tool) that peg the rates regionally, but with the genetic component rates have to be assessed for that region, not applied globally. And there is some thought that the rates could be growing.
So what does this all add up to?
On the low end we’re looking at  up to 7% of mother baby dyads needing either some kind of medical assistance (frenulotomy at 3-4%) or in depth lactation consulting services. Seven percent is the rate of gestational diabetes. It’s the rate of color blindness in males. The rate of ADHD.  On the high end, in a perfect storm of region, genetics and hospital practices we could be looking at up to 15%.  15% is the rate of postpartum depression. 15% is the estimated rate of chemical pregnancies.
For comparison, the rate of twins is 0.32% or 3.2 per 1000. The rate of Downs Syndrome is about 0.1%. Yet those things aren’t regarded as so very rare. Because the results are visible, not hidden.
Either of those figures (as always the truth is somewhere in between, or at least nearby) is an insane number of healthy seeming women and babies (I didn’t touch the issues premature infants face or conditions requiring postpartum lengthy hospitalization of either mother or baby) to be told it’s very rare, it’s not real, to be turned away when asking for help.
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  1. Executive Summary | boobshalffull

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