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Parenteral Nutrition or Total Parenteral Nutrition (TPN)
In children with severe neurological impairment (SNI), the communication between the brain and the gut can be disrupted affecting how their digestive system works. These issues can cause difficulty swallowing, slow stomach emptying, poor movement of food through the intestines, or trouble absorbing nutrients. While medications and other therapies can sometimes help, TPN may be considered when a child cannot get enough nutrition by mouth or a feeding tube. TPN provides nutrients directly into the bloodstream, helping to prevent malnutrition, support growth, and promote overall health and development.
Your Team:
A person trained to care for the sick, especially in a hospital.
A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.
An interdisciplinary specialist who helps manage the medical, social and emotional challenges of complex and/or long-term care.
A medical specialist in the diagnosis and treatment of the stomach and intestines.
A specialist in diet and nutrition, both in proactively building a dietary plan and in treating illness related to malnutrition.
A medical professional who practices general medicine.
Your child’s primary physician will monitor weight and length. A dietician can review nutrition. A gastroenterologist and/or complex care and palliative care clinicians can help guide the decisions regarding placement of a PICC line. A nurse will teach you to care for the intravenous line at home.
What Your Child May Experience
Total Parenteral Nutrition (TPN) is a way to give nutrition when a child’s stomach and intestines cannot be used. In other words, they cannot get nutrients through oral or tube feeding. Instead of going through the digestive system, a special liquid with calories, protein, fats, vitamins, minerals, and fluids goes directly into the bloodstream through a vein.
To give TPN, doctors use a special type of IV called a central line. One common type is a PICC line, which is a long, soft tube placed in a vein in the arm and threaded up to a large vein near the heart. Another option is a port, which is placed under the skin, usually in the chest, and connects to a vein through a small tube. A PICC line stays outside the body and is used when access is needed for a shorter time, while a PORT is fully under the skin and is often used when long-term access is needed.
For some children with severe neurological impairment (SNI), TPN can help meet nutrition needs and support comfort and growth. However, some children with SNI have other serious, ongoing medical problems that TPN cannot improve. In these cases, feeding intolerance may be part of a broader health decline and not the only concern to consider when deciding if TPN is right for your child.
Complex care and palliative care teams can help families decide whether TPN fits their child’s overall health and goals. Important questions to discuss with the medical team include:
- Is my child otherwise medically stable, or is feeding intolerance part of a larger decline?
- What benefits might TPN provide for my child’s health or daily comfort?
- Are there other health or comfort problems that TPN will not improve?
- Could TPN prolong a period of medical decline?
- What are the expected outcomes if TPN is not used?
These conversations can also help families recognize if TPN may no longer be helpful over time as a child’s condition changes.
If Total Parenteral Nutrition is Used at Home
At home TPN may be considered when a child’s gut does not recover despite medications for gut function or pain and after repeated attempts to restart feeding through the digestive tract.
If home TPN is chosen for your child, hospital staff will teach you and your family how to safely manage TPN and care for the central line. This includes how to store and handle the TPN solution, how to set up and operate the infusion pump, how to connect and disconnect the TPN tubing, and how to clean and care for the catheter to prevent infection using sterile techniques. Once your child is home, a home infusion company will help support your family by delivering the TPN bags, supplies, and equipment to your home and make sure you have what you need.
It is also very natural to feel sad, worried, or uncertain when nutrition is given in a new way. If home TPN is right for your child, there will be new skills to learn, and it is okay if this feels overwhelming at first. You are not expected to know everything right away. Nurses will guide you step by step and give you time to practice before you leave the hospital. Once you are home, support remains available, and you can always reach out with questions or concerns.
While TPN can help provide nutrition as neurological changes progress, it may not improve other medical challenges that affect your child’s comfort or overall well-being. For some families, choosing not to add another medical treatment can also be a loving and thoughtful path. Taking time to talk through your goals of care with your child’s medical or palliative care team can help you feel supported, understand what TPN can and cannot do, and explore options that best match what matters most to you and your child right now.
