Expertise centers Hereditary intestinal abnormalities

About the center of expertise

Radboudumc's center of expertise in hereditary intestinal abnormalities specializes in treating children with a congenital colorectal disorder.

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About the center of expertise

Radboudumc's center of expertise in hereditary intestinal abnormalities specializes in treating children with a congenital colorectal disorder.

We provide multidisciplinary care, education and academic research in a national and international context. We specialize in the following diseases:
  • Anorectal Malformations, which is a condition characterized by the absence of a normal anus at its anatomic position central in the sphincter complex Examples are:
In girls:
  • perineal fistulas, vestibular fistulas, vaginal fistulas, cloacal malformations and no-fistulas
In boys:
  • perineal fistulas, rectourethral (bulbar/prostatic) fistulas, bladder-neck fistulas and no-fistulas
  • Hirschsprung’s disease (aganglionosis), which means that ganglion cells (nerve cells) in the distal part of the colon or the entire (large) intestine have not been developed.
  • Children born with a form of cloacal extrophy (open abdominal wall, with abnormalities of the bladder, vagina, intestine or anus).
  • Patients with a referral for a second opinion regarding colonic disorders.
  • Severe constipation requiring colonic irrigation such as with spina bifida. An appendicostomy or a permanent intestinal stoma can be developed for this purpose.
  • Multidisciplinary treatment of fecal incontinence: after an accident or with congenital abnormalities, such as anorectal malformations, Hirschsprung's disease or spina bifida.
Radboudumc's center of expertise  in hereditary intestinal abnormalities is acknowledged by the Ministry of Health, Welfare and Sport.

Making an appointment

You will need a referral letter to make an appointment. Your general practitioner or primary doctor can send this letter to the pediatric surgery secretary.

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Making an appointment

You will need a referral letter to make an appointment. Your general practitioner or primary doctor can send this letter to the pediatric surgery secretary:

Radboudumc Amalia Kinderziekenhuis
618 kinderchirurgie
Postbus 9101
6500 HB Nijmegen

General telephone number: +31 (0)24 361 97 61
Fax number: +31 (0)24 361 35 47

Multidisciplinary consultation

All new patients and all patients undergoing surgery are discussed in the colorectal team every fortnight. The children who are eligible for the multidisciplinary treatment of fecal incontinence are also discussed in the multidisciplinary consultation every fortnight.

Your visit

Detailed information about visiting the hospital with children can be found on the Amalia Children's Hospital website.

Participating in research

Regularly, there is an opportunity to participate in research conducted at our university medical center, for example in the AGORA project.

Education

Our center of expertise provides education in various ways:

  • Offering training to pediatricians, (pediatric) surgeons, nurses
  • Contributing to the education/training of medical students and medical interns
  • Organizing international conferences
  • Collaborating with, among others, European, American and African pediatric surgeons

Folders and other information

  • ARM is short for AnoRectal Malformation.

    read more (in Dutch)

Our expertise


About our expertise

Both children and adults can be treated at our center. The expertise of our colorectal center for children mainly focuses on anorectal malformations, Hirschsprung's disease and severe forms of constipation and fecal incontinence.

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About our expertise

Both children and adults can be treated at our center. The expertise of our colorectal center for children mainly focuses on anorectal malformations, Hirschsprung's disease and severe forms of constipation and fecal incontinence.
 
We particularly specialize in diagnosing these disorders (the initial diagnostics), in the surgical treatment and in the follow-up trajectory which includes the multidisciplinary treatment of incontinence. Furthermore, we have excellent genetic diagnostics of these disorders. Once children with congenital intestinal abnormalities become adults, they need care for adults. Some of these adult patients receive this care from us. The other patients are carefully referred to other healthcare providers.

Collaborations

A number of departments work together at the center of expertise to provide the best possible care.

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Collaborations

The departments that collaborate in this center are the departments of Pediatric Surgery, Surgery, Pediatric Urology, (Pediatric) Gynecology, Neurology & Neurosurgery, Pediatrics & Neonatology, Pediatric Orthopedics, Medical Psychology, Pediatric Physiotherapy (Rehabilitation), Dietetics, Medical Social Work and Genetics.
 
When needed, other disciplines also get involved like the Cardiology or Ophthalmology departments.

Consultations

For children with an anorectal malformation, Hirschsprung’s disease or other congenital intestinal disorders, there are consultations with specialized pediatric surgeons and the clinical nurse specialist.

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Consultations

For children with anorectal malformation, Hirschsprung’s disease or other congenital intestinal disorders, there are consultations with specialized pediatric surgeons (Rassouli, van der Steeg, de Blaauw) and a clinical nurse specialist (van de Vorle).
 
Because many patients have a multidisciplinary condition (i.e. a condition that requires multiple specialists), there is also the possibility to make a joint appointment. For example, a joint appointment can be made with the clinical nurse specialist, the pediatric surgeon, the pediatrician, the pediatric urologist and/or the gynecologist. An appointment can also be made with other specialists, such as a neurologist or neurosurgeon.

For the continence training, there is a special intake consultation for children 3 years and older. This is a consultation with the child psychologist, the pediatric and pelvic floor physiotherapist, the pediatric surgeon and the clinical nurse specialist.

Transition consultation

Every other month, there is a set consultation during which the pediatrics team transfers patients to the adult team. Patients under treatment at Radboudumc or elsewhere can participate.

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Transition consultation

Radboudumc's center of expertise in hereditary intestinal abnormalities specializes in treating children with a congenital colorectal disorder, including anorectal malformations.
 
Every other month, there is a set consultation during which the pediatrics team (pediatric surgeon, clinical nurse specialist, together with other specialists when needed) transfers patients to the adult team (surgeon for adult and clinical nurse specialist). The transition consultation is for patients being treated at Radboudumc, but if your child is being treated elsewhere, you can also sign him/her up for the consultation.
 
From 12 years old, we will begin preparing you and your child for the transition. We use an Individual Transition Plan (ITP) that your child, possibly with your assistance, can complete at home in preparation for the appointment at the hospital with the doctor and/or clinical nurse specialist.
 
The transition is part of the follow-up consultation in which children, and later adolescents, are invited to consultations at set intervals. Among the professionals present at these consultations are the pediatric surgeon (primary practitioner), clinical nurse specialist, dietician, pediatrician, psychologist, physiotherapist, urologist, neurologist,  and/or gynecologist.
 
You can sign up for this consultation via the pediatric surgery secretary
T +31 (0)24 361 97 61
E KinderchirurgieSecretariaat@radboudumc.nl
 

Colonplein

Colonplein is a digital platform for children and parents of children with a disease of the colon and/or anus, especially anorectal malformations or Hirschsprung's disease.

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Colonplein

Colonplein is a digital platform for children and parents of children with a disease of the colon and/or anus, especially anorectal malformations or Hirschsprung's disease. Colonplein is a community in which patients, caregivers and other involved parties can exchange knowledge and experiences in a safe environment. In addition, each patient or parent can create a platform shaped by his/her own specific and required information and treatment plan. Patients can also request advice from their caregiver(s).

You can register for the platform by sending an email to the pediatric surgery secretary: KinderchirurgieSecretariaat@radboudumc.nl

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