The Need

What is Pediatric Palliative Care?

Palliative care is the care of patients whose disease is not responsive to curative treatment, where pain control and control of other symptoms is paramount. Pediatric Palliative care aims to enhance the quality of life of children and young people with life-limiting conditions. In addition to managing pain and symptoms, it's focus is also on offering emotional and spiritual support, providing respite care and supporting the family through bereavement.

What is Respite Care?

Respite is short term care when necessary to relieve the patient's family or other persons caring for the patient. Families often provide chronic and continuous care to their child for years without any "time off" or a "full-nights rest." A skilled facility will give families a chance to physically and emotionally recharge so that they can continue to provide the high level of care their child needs.

What are Life-limiting Conditions?

Life-limiting or life-threatening conditions are conditions not responsive to curative care, where a child is terminally ill with a shortened life-expectancy. Some examples may include malignancies/cancers, rare genetic or chromosomal disorders, heart/lung conditions, rare neurological conditions and complex chronic conditions such as Muscular Dystrophy, Cystic Fibrosis, Rett Syndrome, Spinal Muscular Atrophy or Neurodegenerative Conditions.

Did You Know...

  • Most children living with life-limiting conditions who need palliative care have difficulty accessing support, which can result in unnecessary pain and suffering and excruciating strains on families and communities.
  • There are currently over 45 children’s hospice homes offering palliative care in the United Kingdom, several in Canada, two in Australia and many others around the world.
  • In metro areas around the United States, there are over 4,700 hospice homes for adults, but only a handful that are being built and designed just for children and their unique needs.
  • An estimated 9,000 children in Minnesota have a life-limiting condition.
  • Over 700 children die each year in Minnesota, and at least half of those children could potentially benefit from a children’s hospice home.

When you or someone you know decided to become a parent, did you consider the chances of your child being born with a life-limiting condition? Imagining a long, bright future, typical issues such as runny noses or temperatures, juggling extra-curricular activities turn instead into an emotional roller coaster of gut wrenching decisions relating to the care and wellness of a child with a life-limiting illness. Tragic episodes including trips to the hospital as well as countless stressors on the child, siblings and entire family and support system ensue. The 24-hour care cycle becomes unrelenting. All-consuming medical needs become the focus of a life you never dreamt, but are now facing. Also, not to mention, the struggle to balance priorities that can take a toll on your family, marriage, job and other obligations. Adjustments and compromises are made, but are wrapped around decisions that often cause heartache and emotional strain.

Twenty-five years ago a child with a life-limiting condition may not have been taken home from the hospital following such a diagnosis. The options for care and treatment were not the same. Today, we have advanced medical care for children with life-limiting conditions, and the final care decisions are often left up to the family, along with the extraordinary costs. This responsibility can be crushing for many families. Families who otherwise may have had two incomes may face the decision to quit a job to be home to provide the 24-hour care that is necessary. This decreased family income holds many challenges that effect the ability to pay for essential care, to help care for other children, pay for assistance needed to balance the typical demands of having a family, such as, cooking, cleaning, and extracurricular activities, and the opportunity to spend quality time as a family or to take an emotional break. There are hundreds of families in our community that could use our support and commitment of being a beacon of hope, light and peace in the midst of adversity.

Children's Lighthouse of Minnesota intends to support children with life-limiting illnesses and their families by offering a unique suite of programs and services designed specifically and exclusively for them.

Click here to read our mission