A “pull-through” is the operation in which a surgeon brings the healthy end of the bowel down to the anus, the standard repair for anorectal malformations, Hirschsprung’s disease and some other conditions present at birth. The Pull-thru Network was founded in the late 1980s by parents of children who had been through it, at a time when a family might never meet another with the same diagnosis.
What the network did
It published a newsletter, the Pull-thru Network News, several times a year with articles by surgeons, parents’ accounts, bowel management tips and news of clinics. It ran an e-mail list and later a web forum where parents compared notes at two in the morning. It organised family conferences where children met others with ostomies or the same scars, and it produced a plain-language glossary of the terms families met on hospital rounds. Much of what surgeons now call “family-centred care” in this field was pioneered by this kind of peer support.
The medical background
Anorectal malformations occur in roughly one in 4,000 to 5,000 births and range from a mildly misplaced anus to complex cloacal malformations. Hirschsprung’s disease, in which nerve cells are missing from part of the bowel, is similar in frequency. Surgery is usually successful, but many children need years of bowel management (diet, laxatives, enemas or antegrade continence procedures) to achieve continence, and it is that long tail that peer support addresses.
Where families find support today
The specialised colorectal centres that grew up since the 1990s (Cincinnati, Nationwide Children’s in Columbus, Boston, Great Ormond Street and others) run their own family programmes and bowel management camps. Online, the largest communities are on Facebook, and national organisations such as the Pull-thru Network’s successors, the Hirschsprung’s & Motility Disorders Support Network, ARM-Net in Europe and patient groups in Germany (SoMA e.V.) and the UK provide information and meetings. The International Pediatric Endosurgery Group and the Pediatric Colorectal and Pelvic Learning Consortium publish the current care standards.
This site is an independent reference on anorectal malformations in children and is not the Pull-thru Network.
