Anorectal Malformation and Long-Term Care: Meeting the Needs of Individual Patients
Feb 18, 2019
What Are Anorectal Malformations?
The term anorectal malformation (ARM) refers to a congenital anomaly where the anal opening is in the incorrect location, too small, or opening into another structure in the pelvis. The anal canal contains many nerves that allow us to feel gas and stool and anal sphincter muscles allow us to hold in stool. In a child with an anorectal malformation the nerves of the anal canal do not develop properly and the anal opening either does not develop at all or develops in the wrong spot. There are several different types of anorectal malformations, some which are more complex than others. The more complex types of ARMs also involve the urinary system for boys and both the urinary and reproductive systems for girls.
How Are Anorectal Malformations Treated?
Once a child has been diagnosed with an ARM, the first line of treatment is surgery to fix the anal opening so that it is in the correct spot, as well as repair any urologic or gynecologic problems. While the initial surgery repairs the child’s anatomy, patients require lifelong management.
What Does Long Term Treatment of a Child With ARM Look Like?
The specific management for an ARM patient will depend on the individual child. Some children with anorectal malformations have difficulty feeling and controlling stool even after their anus is repaired. Children with ARM also can have slow moving colons that cause chronic constipation. Others have shorter, fast moving colons that make stool more difficult to control. Children with more complex types of ARMs may also have problems with their kidneys, bladder, and reproductive systems as well, even after surgery.
The most frequent issues that require long-term care include constipation, incontinence (stool and/or urinary accidents), urologic problems, reproductive health-related care and ongoing psychosocial care. Long-term management includes:
Constipation management with a combination of x-rays and medication or enemas.
Treatment of incontinence with medications and/or enemas.
Those with long-term enema needs, may choose to have procedure so that the enema can be given retroactively (through the top of the colon instead of the rectum).
Long term monitoring of kidney growth and function with kidney ultrasounds and lab work.
Management of bladder dysfunction with routine testing and medication.
Treatment of urinary incontinence with medications and/or special exercises to strengthen the pelvic floor muscles.
Some patients will also benefit from additional surgery to help them empty their bladder safely and keep them dry.
Watching for signs of puberty, like breast development, and monitoring girls as they move through puberty and have their first period. Their uterus may be evaluated with a pelvic ultrasound once puberty has stimulated its development. Menstruation is monitored closely to make sure it happens at the correct time and that all of the menstrual blood is able to come out through the vagina; making sure there is no obstruction to menstrual flow.
Ensuring patients have education and support regarding sexual functioning and contraception.
Counseling about pregnancy considerations, including the importance of pregnancy planning, optimizing health with preconceptual care, and consideration of the safest delivery options.
Patients with ARMs will likely also need support from psychosocial specialists to deal with the unique daily challenges they face and they benefit greatly from being involved in support networks with others who share their diagnosis.
Dr. Wood completed fellowship training in Cape Town, South Africa. In 2014, he joined the CCPR team at Nationwide Children's Hospital. Many of his surgical cases are for complex problems, such as cloacal malformations, vaginal replacement, and reoperations for ARM and hirschsprung disease.
Sarah Driesbach, CPN, APN
Center for Colorectal and Pelvic Reconstruction
Sarah Driesbach serves as an advance practitioner nurse at The Center for The Colorectal and Pelvic Reconstruction (CCPR) at Nationwide Children’s Hospital. Sarah utilizes her diverse background and experiences caring for patients with complex colorectal and urological conditions. Sarah joined the CCPR Team in 2017.
Geri Hewitt, MD
Pediatric and Adolescent Gynecology
Geri D. Hewitt, MD, is chief of the Section of Obstetrics and Gynecology at Nationwide Children’s Hospital and an associate professor of clinical obstetrics in the Departments of Obstetrics and Gynecology and Pediatrics at The Ohio State University College of Medicine.
Daniel DaJusta, MD
Daniel G. DaJusta, MD, is a surgeon in the Section of Urology and the Director of Urologic Surgery for the Center for Colorectal and Pelvic Reconstruction at Nationwide Children's Hospital.
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