Pediatric & Perinatal

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What is Pediatric & Perinatal Care?

Life throws curve balls when you least expect it. You and your partner are thrilled to learn you are pregnant but after your ultrasound you receive a devastating diagnosis for the baby. Or your family just celebrated your child’s seventh birthday when you get a phone call from his doctor with results from labs done the day before. He has Cystic Fibrosis. Serious illness can hit a family at a moment’s notice.  There are decisions to be made, symptoms to address, emotional ups and down and spiritual angst to face. The effects of serious illness takes a toll on every person connected to the child. There is support available for children and their families as they navigate life with a serious illness.

Palliative Care:

Specialized medical care that is provided to a patient of any age, with a serious illness at any stage.  It is designed to improve a patient’s quality of life, and that of the patient’s family by providing relief from the symptoms and stresses of the patient’s illness.  It may be provided alongside curative treatments in primary and specialty settings, and is based on the needs of the patient, not the prognosis.  It is delivered collaboratively in any setting, by a specially trained interdisciplinary team that includes healthcare practitioners, nurses, social workers, spiritual care providers, and other patient support providers.

There is specialized palliative care for children and pregnant women who are looking for an extra layer of support as they navigate the journey of serious illness. “It is appropriate for neonates, perinates, infants, children, adolescents, and young adults, and it can be provided along with treatment meant to cure1“.

Pediatric Palliative Care:

When serious illness strikes after birth the specialized care is called Pediatric Palliative Care. “Pediatric palliative care addresses serious medical conditions, including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions and others. It helps relieve the symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping, anxiety and depression. In short, this helps the child and the family improve their quality of life.

Pediatric palliative care is family centered. It helps with communication and coordination of care. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family1.”

Examples

Here is more detailed information on pediatric palliative care and examples of how it has helped families can be found on the Get Palliative Care website. Below are links to specific topics in which you may have an interest.

Pediatric Palliative Care

When families work with pediatric palliative care, individualized care plans are created and may include2:

  • Goals for care and how those goals will guide decisions. These come from conversations the palliative care team has with parents/guardians and when appropriate, the child.
  • The plan for treating commons symptoms of serious illness include:
    • Pain
    • Shortness of breath
    • Sleep concerns
    • Nausea and vomiting
    • Anorexia and weight loss
    • Fatigue
    • Depression and anxiety
    • Delerium and agitation
    • Anemia and bleeding
    • Seizures
  • Where to go for sudden illness
  • Will CPR and a ventilator be used
  • Plans for a life-threatening event at home or school including creating medical orders for emergency personnel
    • Comfort One – a medical order for EMS and other healthcare professionals created by a child’s provider and parent/guardian when the decision has been made to no longer undergo CPR or be placed on a ventilator.
    • MOST – Medical Orders for Scope of Treatment are medical orders created by a child’s provider and parent/guardian that tells all healthcare professionals in any setting what their medical preferences are for:
      • Hospitalization
      • CPR
      • Ventilation
      • ICU
      • Artificial Nutrition and/or Hydration
      • Dialysis
      • Any other medical order specific to that child.
  • Contact information for individuals with expertise and availability to help during a crisis

Perinatal Palliative Care

When serious illness strikes during pregnancy the specialized care is called Perinatal Palliative Care. This care is interdisciplinary coordinated services offered to women who continue the pregnancy with a life-limiting or life-threatening fetal diagnosis from the time of diagnosis through the neonatal period and beyond3. The goal of this team is to provide support and continuity of care throughout pregnancy, delivery, and the postpartum and neonatal periods honoring patient/family values4.

Women and their support person, their perinatologist and the perinatal palliative care team work together throughout the pregnancy to share diagnosis, likely prognosis and options for care. Options may range from termination of the pregnancy to curative treatment after the baby is born.

The options, based on what matters most to the mother and her support person(s), are usually written down in a birth plan. The birth plan is a tool to communicate with all the healthcare professionals working with the mother during the pregnancy and birth. It outlines the type of care for the baby chosen by the mother. The plan is discussed and altered, if appropriate, based on any new information that comes along during the pregnancy and after the baby’s birth. Plans vary but some common components of a birth plan may include4:

  • Preferred terminology- baby, pregnancy, fetus, name (if known)
  • Does the mother want fetal monitoring
  • Care of the newborn-provisional (subject to change if a different diagnosis or prognosis results from birth)
    • Skin-to-skin contact
    • Hydration
    • Feeding and Lactation
    • Managing respiratory distress
    • Pain control
  • Who will attend the birth and their role
  • Rites or Ceremonies wanted
  • Rooming in- is it wanted

Payment & Referral Information

Does My Insurance Pay For Pediatric or Perinatal Palliative Care?

Pediatric palliative care doctors, nurse practitioners and physician assistants bill your insurance for the care they provide in palliative care. Nurses, social workers, chaplains and pharmacists who are part of the palliative care team generally do not bill for their services. For children covered under South Dakota Medicaid, they are eligible for concurrent care. This allows the child and family to get the comprehensive support that may be needed to live well with their diagnosis along through hospice programs while pursuing curative treatment.

How Do I Get Connected With Pediatric or Perinatal Palliative Care?

The specialty of palliative care is limited in South Dakota. The subspecialty of pediatric or perinatal palliative care is even more limited. Currently it is only available in Sioux Falls. Any of your child’s providers can make a referral for pediatric palliative care. The pediatric palliative care providers may be able to help your local provider through phone calls or telehealth options. For children covered by Medicaid, concurrent care allows your child and family to receive the support of a hospice interdisciplinary team wherever your child calls home while receiving curative treatment.

Pediatric Palliative Care is available through Sanford Health’s Pain Relief, Integrative medicine, Support and Management of symptoms (PRISM) program:

  • Dr. Daniel Mark- Board Certified/Fellowship Trained Pediatric Palliative Care Physician
  • Dr. Paulo Niño- Board Certified/Fellowship Trained Pediatric Palliative Care & Pediatric Critical Care Physician
  • Pam Koepsell, APRN, CNS PRISM/Pediatric Palliative Care

Sanford Health’s Ava’s House: Intergenerational Hospice House including infants and children: 605-404-4800

  • The state’s only pediatric trained residential hospice facility
  • Nursing staff receive pediatric ELNEC training

Perinatal Palliative Care Referrals:

  • Sanford: All referrals for perinatal palliative care will come through the Maternal Fetal Medicine Clinic. 605-328-4600
  • Avera: Referrals will come to The Embrace Coordinator: 605-322-4428
  • Monument Health: Referrals will come to Monument Health Home Plus Home Health and Hospice: 605-755-7710 (Rapid City) or 605-644-4444 (Spearfish)

Looking For Help

Below are a few organizations in South Dakota who specialize in caring for children with serious illness and their support people. Click on the name to go directly to their website.

South Dakota Resources for Perinatal and Pediatric Palliative Care

  • South Dakota Department of Health
  • LifeScape Children’s Specialty Hospital – Our Children’s Specialty Hospital provides extensive inpatient rehabilitation and specialized medical care for individuals from birth to 21 years.
  • Department of Social Services Medicaid Coverage Programs
  • Disabled Children’s Program – Intended for children with disabilities who have medically fragile conditions requiring skilled nursing care in a medical facility if they were not being cared for a home.
  • Family Support 360 Waiver – Provides personal care 1, respite, support coordination, supported employment, personal care 2, companion care, environmental accessibility adaptations, nutritional supplements, specialized medical adaptive equipment and supplies, specialized therapies, and vehicle modification services to individuals with intellectual disabilities or developmental disabilities ages 0 or older who meet an ICF/IID level of care.
  • Choices Waiver – Provides assistive technology, career exploration, case management, day services, group supported employment, individual supported employment, residential habilitation, shared living residential habilitation, small group vocational support, and specialized medical equipment and drug services to individuals with intellectual disabilities or developmental disabilities ages 0 or older who meet an ICF/IID level of care.
  • Birth to Three – South Dakota’s Early Intervention Program
  • Children with Special Health Care Needs – South Dakota’s Title V program (Department of Health)
  • Strengthening Families Program – state-based program with flexible funds for HCBS services (Department of Human Services)

Family Resources

Diagnosis Specific Support:

Often you can find national foundations or organizations associated with your child’s specific diagnosis that offer education and support to children and their families on their journey to live well with serious illness. Try using a google search for the illness which is impacting your lives- for example: go to Google and search “Cystic Fibrosis Foundation”. Just be sure you are getting information from a reputable organization and always consult your physician before starting anything recommended on a website.

References

  1. Pediatric Palliative Care. Get Palliative Care. Updated February 3, 2025. Accessed February 3, 2025. https://getpalliativecare.org/whatis/pediatric/.
  2. UpToDate. (n.d.). Pediatric palliative care. UpToDate. https://www.uptodate.com/contents/pediatric-palliative-care?csi=d1655a95-94e9-4939-a5c6-b507b1539e4d&source=contentShare
  3. McCarthy FT, Kenis A, Parravicini E. Perinatal palliative care: focus on comfort. Front Pediatr. 2023 Sep 26;11:1258285. doi: 10.3389/fped.2023.1258285. PMID: 37822320; PMCID: PMC10562587.Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10562587/. Accessed February 3, 2025.
  4. American College of Obstetricians and Gynecologists. Perinatal Palliative Care. ACOG Committee Opinion No. 809. Obstet Gynecol. 2019;134(3):e118-e124. doi:10.1097/AOG.0000000000003393. Available at: https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2019/09/perinatal-palliative-care https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2019/09/perinatal-palliative-care. Accessed February 3, 2025.