Cleft lip/palate charities: what does one surgery really accomplish?

It’s clear why donating to charities that fix cleft palates and other deformities – such as SmileTrain or Interplast – is popular among donors: the donation’s impact seems extremely tangible. A donor can see “before” and “after” pictures of children, and feel that the donation helps a child with serious problems become a “normal” child. But in our view, those “after” pictures don’t fully represent what’s going on.

To see why, consider these profiles of cleft repair patients in the U.S. Going through the profiles starting with “A” (33 of them), we see 11 mentions of multiple surgeries (including nine in one case and seven in another) and 6 other profiles that mention the prolonged use of equipment such as a NAM device. An additional 3 mention other major birth defects, and one states that a single surgery “has not helped [the child's] speech.” One child’s treatment is chronicled in a 27-page journal.

By contrast, it appears that cleft palate charities (both those that conduct surgical missions and those that pay local doctors to perform surgeries) often provide only one surgery for each child, with no follow-up. (See, for example, question 26 of our interview with a surgeon.)

How much good does performing one cleft surgery actually accomplish?

I think it probably accomplishes some good, but I think it’s fair to say that it probably doesn’t accomplish what donors expect: transforming a child that would have lived a very difficult life as something of an outsider into a fully “normal” child.

Comments

Cleft lip/palate charities: what does one surgery really accomplish? — 11 Comments

  1. I wrote about cleft pallet surgeries recently on my as well. There are some real issues surrounding surgical that are flown in and flown out, as described in an article by the New England Journal of Medicine. One of the problems is death due to post-surgery complications and infections.

    Here is a link to my posting as well as the NEJM article

    http://informationincontext.typepad.com/good_intentions_are_not_e/2009/07/problems-with-surgical-volunteer-teams.html

    http://content.nejm.org/cgi/content/full/354/5/443

  2. I don’t think they do it if it doesn’t help people with their problems. But this is a hard subject if you really think what could be the best option. Surgery is always a risk and I have been lucky to avoid not to ever have one.

  3. Agreed but sometimes surgery is unavoidable. My nephew Brandon was born with a cleft lip 4 years ago. My sister and brother-in-law heard about Dr. Tae Ho Kim of NY Group for Plastic Surgery in Tarrytown (http://www.nygplasticsurgery.com) and set up an appointment around his 1st birthday. Dr. Kim is the Chief of Craniofacial and Pediatric Plastic Surgery at the Maria Fareri Children’s Hospital and the Westchester Medical Center so he came highly recommended. Brandon underwent the surgery and his parents are thrilled with the results. Today Brandon has minimal scarring and is a happy healthy boy. It’s best to get the most information prior to making any decision. Dr. Kim has a very informative site on the subject which should help: http://www.craniofacialhealing.com

  4. Speaking as someone who has done extensive research into cleft charities, including the two that you mention, I can only say that I am simply appalled at Elie’s ‘twitter.’

    To couch such a serious pseudo-argument within four inches of half-baked speculation is irresponsible in the extreme.

    “I think it probably accomplishes some good.”

    What?? Let me guess, you’re biding your time until a spot on Fox & Friends opens up?

    Go ask a child in Mirzapur if she agrees with you. You should be ashamed of yourself. If my seven-year old produced this for homework, I would be absolutely mortified.

  5. Are their any charities that allow multiple people to choose to donate to the entire surgical and recovery process for a single child? Kind of like a kickstarter fund in style – the overall maximum cost is given, and hn that is reched every person ho donated could receive updates about how the child is doing. Or a single person could choose to sponser a child’s surgery etc. That would seem to me to be a more beneficial method. Does anything like this exist? I would very much like to look into contributing to this kind of charity, but I would prefer to know that the child would get the full treatment they needed.

  6. Elissa,

    I’m not aware of any such organization, but the Against Malaria Foundation, a Givewell-recommended charity, does match donors’ contributions to net distributions in specific villages, including allowing donors to fund the entire distribution if desired. You get photos and videos documenting the distribution. See here for an example:
    http://www.againstmalaria.com/Distribution.aspx?ProposalID=172

  7. Have you done an evaluation on Watsi.org – they seem like a good idea to me?

  8. As a person with a bilateral cleft lip and palate I’m surprised that with the amount of babies born this way (including my daughter) that it’s so hard to find a reputable charity to donate to. Thank you for the information you are posting.