What is an intestinal rehabilitation program?
An intestinal rehabilitation program is a multidisciplinary team that focuses on managing intestinal failure in children.
An intestinal rehabilitation program is often made up of representatives from different disciplines or areas, such as:
- General Surgery
- Gastroenterology
- Neonatology
- Transplantation
- Clinical Nutrition
- Social Work
- Nursing
- Physiotherapy
- Occupational Therapy
- Psychology
- Speech Language Pathology
- Child Life
Who are we?
General surgeon
The surgeon has an important role in the natural history of all patients with intestinal failure.
For patients with short bowel syndrome (SBS), the surgeon is typically present from the beginning as they perform the initial surgery. The surgeon is also closely involved during the adaptation process to perform any additional surgeries your child may need to improve their chances of weaning off parenteral nutrition (PN). If your child develops severe complications from intestinal failure, the surgeon will perform an intestinal and/or liver transplant. The goal of surgery for intestinal failure is to improve intestinal function.
Gastroenterologist
A gastroenterologist is a doctor specially trained to diagnose and manage digestive problems. They are an important part of the intestinal failure team.
The gastroenterologist is involved in all aspects of the medical care of children with intestinal failure, including:
- optimizing medication and nutritional therapy
- preventing and treating complications with an overall goal of achieving full feeds and stopping PN
In many cases, children require an assessment of their intestine by an endoscopy. This procedure is done by the gastroenterologist.
The gastroenterologist also plays a major role in determining if your child could have a rare disease that can cause motility disorders or congenital diarrheas. Lastly, if a liver and/or intestine transplant is needed, the gastroenterologist decides on the best timing for the transplant and follows the children after their transplant.
Nursing
Nursing is heavily involved in the care of children followed by an intestinal rehabilitation program throughout their lives.
Nurses will meet families and children during their inpatient stays and lead the teaching to prepare families for going home with a child on PN with a central venous device. Nurses continue to play a major role once children are discharged home in providing ongoing support.
A nursing team might also include nurse practitioners (NPs) who follow both the inpatient and outpatient children with intestinal failure. The NPs see inpatients and are also responsible for the day-to-day management of children at home.
Dietitians
Registered dietitians (RD) provide nutrition assessment, treatment and counseling to patients with intestinal failure. The RDs will see children in both the inpatient and outpatient setting.
RDs assist with intestinal rehabilitation by creating feeding programs that are tailored to each child, whether this be with parenteral or enteral nutrition. Nutritional plans are monitored through a child’s growth, blood work, fluid balances and body composition (e.g., bone mineral density scan). The RDs aim for intestinal adaptation while making sure your child grows as expected.
Speech-language pathology
A speech-language pathologist (SLP) may be involved in your child's care particularly if your child is late to talk, their speech is not understandable to strangers by the age of three, your child stutters or their language seems stalled.
Occupational therapy
An occupational therapist (OT) assesses and helps with oral feeding and swallowing safety and brain development.
The primary goals are to establish safe oral feeding and to build oral motor feeding skills in infants and children as they progress through the intestinal rehabilitation process. An occupational therapist also assesses your infant or child’s development and helps them achieve developmental milestones while in hospital.
Physiotherapy
Physiotherapists help promote increased mobility, strength, postural control, flexibility, coordination, balance or core stabilization, gross motor skills and motor planning.
They also provide education to parents and caregivers and offer guidance for post-surgical activity.
Psychology
The role of a psychologist is to help children and families promote healthy cognitive, behavioural, emotional and social development.
A psychologist can develop and implement individual psychological therapies. They can also provide family-based support. Psychologists will often assess children during periods of educational transition, for example:
- entry to grade school around age 6
- before high school entry around age 13
- transfer to higher education or to the workplace at around 17 years
Caregiver and teacher reports are often incorporated, and recommendations can be provided where appropriate, to assist with access to educational, community-based developmental and mental health resources.
Child life specialist
Child life specialists are often introduced to help children prepare for medical procedures.
Child Life uses play as a way of understanding a child’s temperament and level of anxiety related to their health-care experience, their past experiences with medical procedures and their understanding of the reason for being admitted to the hospital. Child life specialists help prepare children for medical procedures and provide coping strategies to reduce anxiety, provide distraction during medical procedures and offer opportunities for play that promote a child’s development and well-being.
Social workers
Social work involves evaluating a child and/or their caregiver(s) to identify the family’s needs. Social workers often draw on family strengths and use various strategies to help children and their families achieve optimum psychosocial and social functioning. Common services offered include:
- individual and family counseling
- mental health assessment
- resource counseling
- advocacy
- crisis intervention
- consultation