The 3 general phases of diet and nutrition for infants and young children with short bowel are:

The entire intestinal adaptation process, and weaning a child completely from PN and enteral feeds, can take years. To learn more about PN and enteral nutrition visit: https://www.transplantunwrapped.org/nutrition

Phase 1:

• First few weeks of life

• Initial stabilization phase

• Infant is started on parenteral nutrition (PN): nutrition through the veins to stabilize fluids and electrolytes

• Often high output (lots of stool)

• Goal is to meet the needs for growth and development

Phase 2:

• Start the child on enteral feeds (tube feeding), usually continuous, to stimulate intestinal adaptation

• Begin weaning off of PN, if tolerated

• Supplement the appropriate vitamins, minerals, and electrolytes

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Phase 3 (Many months to years later):

• Intestinal adaptation is near completion

• Start on age-appropriate oral foods, generally food that is high-protein, low-fat

• Try to avoid carbohydrates because of their osmotic effect (cause increases in diarrhea)

• If the child has an oral aversion to food, consider seeing an occupational therapist or speech-language pathologist

• Try to wean off enteral feeds (tube feeds)

Complications that can occur in the setting of Neonatal GI disorders or Short Bowel Syndrome include:

• Intestinal failure associated liver disease (IFALD) or cholestasis occurs when there is a decreasing in release of bile from the liver. This leads to liver and nutrition absorption issues. It can also cause babies to appear yellow.

• Many infants need additional surgeries after their first abdominal (belly) surgery. This can be due to complications (like scarring or stricture formation) or planned (like to reverse an ostomy that is created).

• Infections/sepsis can occur in infants. Infants who need IV lines or IV nutrition (parenteral nutrition) are at increased risk for infections, particularly blood stream infections or sepsis.

• Neurodevelopmental effects can occur. Infants and pediatric patients with intestinal failure or short bowel syndrome are at higher risk for developmental delays. The best course is to closely monitoring patients with intestinal failure or short bowel syndrome, like through their pediatrician and start therapies early when concerns are noted. If you have concerns, talk to your child’s pediatrician or intestinal rehabilitation team.

Because of the many long-term effects noted below, it is important to have close follow-

up with your child’s medical team.

a. Need for equipment: If your child needs to go home with a feeding plan, either

enteral or parenteral they will need additional equipment pieces and planning

for many life events (school, travel, etc.).

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TOC_DIGITAL_lo.pdf

b. Quality of life: The need for long-term medical care can affect both the patient’s

quality of life but also the caregiver/parents. There can be added stress and

anxiety related to the need for frequent and recurrent medical interventions. It is

important for you to know, some studies show children with intestinal failure

often rate their quality of life higher than their parents perceive. Work is being

done to understand the impacts of this disease on parent and child quality of

life long-term with more understanding needed about how best to support

families and patients. It is important to discuss these concerns as they arise

with your medical team both for you and your child.

c. Digestive problems and growth effects: Even if your child is able to wean off

TPN and tolerate feedings, they can still have ongoing digestive issues and

problems with absorption. It is important to monitor with your child’s medical

team their overall growth and diet tolerance. Children who a missing a portion

of the intestine may have issues absorbing certain nutrients. Because of this,

they may require long-term monitoring and possibly supplements/vitamins even

when they are off TPN.

Additionally, the altered absorption of nutrient and digestion can negatively

affect a child’s growth. It is important to monitor your child’s growth closely

along with their medical team.

d. Developmental delays: Children with intestinal failure are at increased risk for

developmental delays. It is important to closely monitor your child’s

development along with their medical team. Early diagnosis and interventions

(i.e. physical therapy, occupational therapy, speech therapy, etc.) are important

to help your child achieve their best potential.