Pediatric Complex Care Services

Children with life-limiting and life-threatening medical needs deserve a dedicated team of pediatric experts to offer support and guidance. Our team offers a holistic approach to make sure your child’s needs are met across different teams of specialists.

We also help family members understand their child’s diagnosis and support conversations about treatment options.

MU Health Care’s pediatric complex care services team coordinates care for children and families navigating complex or life-threatening medical conditions. Our staff provides physical, social, emotional and spiritual support to help families set and achieve treatment goals.

Our Approach to Care Support

Every child, family and diagnosis is different. We take time to get to know your child and your family so we can support you throughout your treatment journey.

Our pediatric support care services team includes two physicians with advanced training in palliative care, a child life specialist, an advanced palliative hospice social worker and a family nurse practitioner. Together, we help families talk through questions such as:

  • What does this diagnosis mean for my child?
  • What treatment options are available?
  • What can we expect during treatment?
  • Which treatment goals are right for my child?

We also listen closely to your perspective and may ask:

  • Is there anything you don’t understand about a diagnosis or treatment?
  • What are your fears and concerns?
  • What are your hopes for your child?
  • What do you want your child’s medical team to know that isn’t in their medical chart?
  • What parts of medical care can we make easier for your family?

By understanding your family’s goals, we partner with you and help advocate for your child and communicate with your child’s care teams.

If you feel your child could benefit from our services, please ask their primary provider to consult our team. If your child is eligible, we will set up a meeting with your family.

Conditions We Support

Our team works closely with every pediatric specialty within MU Health Care’s Children’s Hospital. We also work with your child’s primary care provider and coordinate care with providers at other institutions when needed.

The goal of our team is to support families who are dealing with the life-limiting or life-threatening illness of a child. This support extends to infants as well as neonates and pregnant individuals who have received a fetal diagnosis.

Specialty care for your child may include:

We also offer palliative and hospice care services. Our role is to help families make informed decisions about care and support those decisions, whether that choice is to pursue aggressive treatment or focus on comfort care.

Our social workers and child life specialists also work closely with your child to help them understand each of the tests and treatments necessary for their care to improve their comfort.

Pediatric Complex Care Support Options

Most treatments focus on preventing or easing symptoms that may affect your child’s comfort and daily life, including:

  • Pain
  • Nausea
  • Constipation
  • Difficulty sleeping
  • Loss of appetite
  • Fatigue
  • Shortness of breath

We also emphasize finding stability in disease management, so you and your child can avoid repeated hospital or emergency room visits when possible.

If you are wondering whether your child is eligible, please ask your child’s primary care provider for a referral. If you have any questions about complex care coordination at MU Health Care, please reach out to our team for more information.

If you have questions or need help navigating care here, we are your first line of support to make your child’s care smoother and more connected. Our team cares for children receiving inpatient care at Children’s Hospital as well as those seen in outpatient settings. We also check in with families over time to provide continued support.

If you have more questions about pediatric complex care services (Journeys) and want to speak to a member of our team, please call us at 573-771-4266 or email Lacey Prater at PraterL@health.missouri.edu.