Anorectal Malformations (ARM) are rare defects present at birth in 1 in 5000 children. ARM are found in both boys and girls and while the primary malformation is anorectal, an ARM can also affect a child’s urological, gynecological, spinal, cardiac, airway and limb systems.
What to Expect
Most children with ARM are diagnosed after delivery which is often a great shock for parents, as it is completely unexpected. Many patients will require an initial operation to form a colostomy to divert the fecal stream. This surgery is usually performed in the first 48 hours after birth. This allows patients to grow safely until more complex surgery can be performed between 3 and 6 months of age.
Definitive surgery often requires input from urology and gynecology and sometimes all three teams work together to perform the reconstructive surgery. There are a wide range of malformations in both boys and girls from the very simple to extremely complex. The goal of surgery is to reconstruct the urological, gynecological and colorectal anatomy as completely as possible.
Surgical repair is only the first step in caring for these patients. Families not only want to assure long-term gynecological and fertility abilities, but also know their child has control of bladder and bowel function. The care team should work with each individual patient and family to assist them with daily functions and make entry into the school system as easy as possible. Not all patients are able to have their own bowel and bladder control, but the team should work with them to make social situations as manageable as possible.
What Happens After Surgery?
Patients with ARM are long-term patients and need care throughout childhood, into adolescence and beyond. Early expert care and later reconstructive surgery is important to setting these patients up for success, however it is the ongoing care offered by a dedicated group of surgeons, nurse practitioners, nurses and staff which makes all the difference in achieving best outcomes.
The Center for Colorectal and Pelvic Reconstruction at Nationwide Children’s Hospital is a comprehensive multi-disciplinary center which has treated ARM patients from all 50 states and in 2017 we have directly cared for children from Canada, China, Guatemala, Iraq, Israel, Macedonia, Mexico, Qatar, Russia, Serbia-Montengro and the United Arab Emirates. As the busiest center in the United States we also offer a transitional clinic based at The Ohio State University Hospital to care for patients into adulthood. For more information or to request an appointment click here.
Center for Colorectal and Pelvic Reconstruction, Associate Director
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