CPN | A Guide to Understanding Your Child's Nutritional Needs Throughout Illness and at End of Life

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A Guide to Understanding Your Child's Nutritional Needs Throughout Illness and at End of Life


Feeding our children is a cornerstone of parenting and when feeding is aided by medical intervention the instincts of parents are tested even further. Many children benefit from the use of a feeding tube to give nutrition, fluid, and medications, often over many years. To help families navigate the complexities that arise, Courageous Parents Network has partnered with Dr. Julie Hauer–a pediatric palliative care doctor and medical director of the pediatric residential facility Seven Hills whose area of expertise is in caring for children with severe neurological impairment  — to offer a new GUIDE on recognizing the signs and symptoms related to overfeeding, underfeeding and how to work with your medical team to find the right balance. The guide explores the:

  • risks of over-feeding in children with feeding tubes.
  • signs of over-feeding as end of life is nearing
  • concerns about underfeeding and lack of hydration at end of life

For those families who are looking at feeding issues or are wondering about what to expect, we hope this helps. As Dr. Hauer notes in her introduction:

This information will never replace the supportive presence of experts in palliative care and hospice, along with other members of your child’s medical team. I wish this was easier, I wish there was a test to tell you when this is happening, and I wish you didn’t need to worry. Your worry represents unconditional love for your child. I know with emotional support and relevant details, a parent can feel more settled about decisions, even when they will never feel good about the reason for the decision. It is natural at such times to experience doubt while having certainty in the decisions along the way. I am glad you have Courageous Parents Network as another tool to assist you in your child’s journey.

As always, you are not alone.