On the New Yorker’s ‘EDS doctor’ story

A fascinating tale in the New Yorker: Michael Holick, a medical researcher and doctor at the Boston University, Massachusetts, has been finding that many American families that have had their babies taken away from them because State Services suspected abuse are in fact up against a little-known disease, called hypermobile Ehler-Danlos syndrome (EDS). The story typically goes like: family finds bruises on baby, rushes to doctor, doctor finds other bruises all together consistent with abuse, notifies state, State Services separates family and baby with emergency order, baby given to custody of guardian, case goes to trial.

Enter Holick, who, with his hypermobile EDS diagnosis, gives stranded families a new way to deal with an already difficult problem. But it’s not so straightforward. For one, Holick’s ideas are not supported by the scientific literature (nor by people known to have EDS, although this is not directly written in the story). For another, he diagnoses the babies at a rate inconsistent with the affliction’s known prevalence. For a third, he diagnoses babies of hypermobile EDS without seeing them first. In fact, as with most New Yorker stories, a summary is only going to diminish the journey of discovery necessary to understand the story in its fullness, so please go ahead and read it.

In the meantime – some of my notes after reading:

1. The New Yorker story seems to be missing details of whether the babies continued to bruise after they are returned to their parents’ custody. The story begins and ends with fractures that occur before Holick enters the families’ lives. It would be interesting to know if physical injuries, although not necessarily at the level of fracture, continued after as well.

2. It sounds to me like Holick’s research into hypermobile EDS is funded by families he has freed from the blame of child abuse using the explanation of hypermobile EDS. This is a severe conflict of interest. If this cycle was broken, and the donations from families redirected to a fund administered by scientists acting on the basis of empirical evidence, it would be interesting to see if Holick can convert some of his insights into usable data. He could also be disabused of his belief that the burden of proof is on others, not on him, when he has little proof himself (“He said that those who find fault with his views should … do studies of their own”).

2. Holick says that, before him, the conviction rate in child abuse cases used to be 100%, and after him, the rate dropped to about 90%. So in 10% of those cases, did the prosecution win the case despite Holick’s expert testimony? It would be interesting to find out more about these cases – especially if Holick was convinced that the babies had hypermobile EDS while the prosecution was able to prove that they didn’t, and that the babies had actually been abused. It could also highlight whether Holick holds an EDS conclusion before he has proof.

3. At one point in the story, a judge seems really impressed by Holick’s “172-page résumé”. I don’t know if the “résumé” here refers to Holick’s alternative explanation, in document form, of how a baby in question could have been injured or to his professional record. If it’s the latter, then it’s weird that it is 172 pages long: a résumé by definition is brief. The longer version is the curriculum vitae; although most people regularly use the two labels interchangeably, the New Yorker is also famous for its pedantry. So it’s reasonable to assume the judge was impressed by his alternative explanation – but I think the magazine should still clarify. Otherwise, it sounds like the judge is impressed by his CV and that’s never a good thing.

4. The aftermath of the 2014 interaction between Holick and Robert Sege is remarkable. To me, Holick’s reaction (that the hospital he works at expects him to “cease and desist”) gives away his insecurity about his position and his beliefs. I don’t think he’d have reacted this way if he’d had empirical evidence to back him up. The interaction also exemplifies the basis of his opponents’ vehemence: by not submitting to the traditional methods of medical enquiry, Holick is keeping the door open for potential medical malpractice, though it may not be deliberate. More importantly, if he gets just one diagnosis wrong in a trial that ends up compromised for it, things can get really bad really fastfor the baby.