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PubMed This is a summary of 24 peer-reviewed journal articles Updated
Neonatology · Trisomy 18

What Does Comfort Care Include for Newborns With Trisomy 18?

At a Glance

Comfort care for a newborn with trisomy 18 provides active support to relieve pain and breathing distress, support safe feeding and mouth care, encourage bonding and memory-making, and honor family goals, including hospice or home-care planning when appropriate.

In this answer

4 sections

01

Creating a Peaceful Environment

02

Active Symptom Management

03

Feeding and Mouth Care

04

Memory-Making and Support

Because trisomy 18 can affect each baby differently, families face highly personal decisions about their newborn’s care. Some families choose interventions like breathing support or surgeries, while others choose comfort-focused care (also called comfort care). This approach focuses entirely on your baby’s quality of life and relieving distress, rather than using medical interventions meant to prolong life [1].

Choosing comfort care does not mean abandoning medical care. Your baby will receive active, deeply compassionate support designed to manage symptoms, support bonding, and honor your family’s wishes [2][3]. This care is often guided by a palliative care team—specialists who provide an extra layer of support for families navigating serious illness [4]. Palliative care can actually be provided alongside any treatment plan, but these specialists are experts in guiding comfort-focused care and symptom management.

Creating a Peaceful Environment

The foundation of newborn comfort care is creating an environment where you can bond safely with your baby [5].

  • Skin-to-skin contact: Also known as kangaroo care, holding your baby bare-chest to bare-chest may help regulate their heartbeat and lower stress [6][7]. Care teams will help you position your baby safely to ensure their airway remains clear and they are warm enough [8].
  • Gentle handling: Care teams will handle your baby gently and use supportive positioning to avoid unnecessary stress [6].
  • Parental presence and rooming-in: Depending on hospital policy and your baby’s stability, hospitals often accommodate rooming-in (staying in the same room together). Depending on your goals, the care team may reduce or remove cardiorespiratory monitors (alarms that track heart rate and breathing) so you can focus on your baby rather than the screens [9][10].

Active Symptom Management

A dedicated team will proactively assess your baby for signs of distress, such as changes in facial expression, crying, or breathing effort [11]. Symptom management uses both non-drug measures and individualized medical treatments:

  • Pain and breathlessness: Doctors can prescribe opioids (such as morphine or fentanyl) to relieve pain or breathing struggles [12][13]. The route depends on your baby’s ability to swallow and local protocols. Medicines might be given via an IV, under the skin, or through the oral-transmucosal route (absorbed through the cheek or under the tongue) [14]. Dosing is carefully monitored to prevent excessive sedation.
  • Seizures and agitation: If your baby is distressed by suspected or confirmed seizures, anti-seizure medications may be used to settle them [15]. Medications to reduce anxiety or agitation are also available [16].
  • Targeted medical treatments: Some treatments are used as time-limited trials to see if they improve comfort. For instance, oxygen might be used if it relieves breathing distress [17], or gentle suctioning may be used for excessive saliva [18]. However, because suctioning can sometimes cause distress or airway irritation, it is only used if it clearly helps your baby. Caffeine is occasionally used in specific circumstances for certain types of breathing pauses, but it is not a routine comfort treatment [19]. If a treatment does not improve your baby’s observable comfort, it can be stopped.

Feeding and Mouth Care

Feeding decisions are individualized based on your baby’s swallowing safety and your family’s goals [6][5]. You may choose to offer breast milk, colostrum, or formula, or use a feeding tube if that aligns with your goals [20]. Feeding should never be forced; if your baby shows signs of choking, color change, or coughing, the care team will reassess. If feeding becomes difficult or unsafe, the team will focus on excellent mouth care—keeping the lips and mouth moist to relieve dryness and keep your baby’s mouth comfortable.

Memory-Making and Support

Comfort care pathways are designed to give your family meaningful time together, regardless of how long that time may be [10].

  • Creating memories: Teams will support rituals that are meaningful to you, such as bathing your baby, taking photographs, capturing footprints, or reading and singing [10][21]. When hospital policy allows, siblings and extended family are encouraged to visit [22].
  • Spiritual and cultural support: Your religious, spiritual, and cultural beliefs are central to the care plan. The team can help arrange naming ceremonies, blessings, or the presence of spiritual leaders [23][24]. Social workers, chaplains, and child-life specialists are also available to support your emotional needs.
  • Going home and hospice: If your baby is stable and you wish to go home, the team can help explore local perinatal hospice or home-care services [3][19]. Hospice availability varies by region. Going home requires a carefully written plan that includes medications, equipment, a 24-hour contact number, and clear instructions on what to do if symptoms change.

Common questions in this guide

What does comfort care mean for a newborn with trisomy 18?
Comfort care is active care that prioritizes relief of pain, breathing distress, and other symptoms, along with bonding and family goals. It may avoid medical interventions whose main purpose is to prolong life. It does not mean stopping care; a palliative care team continues to monitor and support the baby.
How will the care team tell whether my baby is uncomfortable?
Clinicians look for changes in facial expression, crying, and breathing effort that may signal distress. They reassess the baby regularly and can adjust comfort measures or medicines to relieve symptoms.
Can comfort care include medicine or oxygen?
Yes. Opioid medicines may be used for pain or breathing struggles, and anti-seizure or calming medicines may be used when needed. Oxygen or gentle suctioning may be tried if they clearly improve comfort, and a treatment can be stopped if it does not help.
How are feeding and mouth care decisions made?
The team considers your baby's ability to swallow, signs such as choking or color change, and your family's goals. Breast milk, colostrum, formula, or a feeding tube may be offered when appropriate, but feeding should not be forced. If feeding is unsafe or too difficult, keeping the mouth and lips moist can help relieve dryness.
Can we hold our baby and make memories in the hospital?
When safe, staff can help with skin-to-skin contact, gentle positioning, and rooming-in. Families may also be supported in bathing, taking photographs, making footprints, reading, singing, and arranging visits from siblings or extended family according to hospital policy.
Can a newborn receiving comfort care go home with hospice?
If your baby is stable and you want to go home, the team may help arrange perinatal hospice or home-care services, depending on local availability. A discharge plan should cover medicines, equipment, a 24-hour contact number, and what to do if symptoms change.

Related questions

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How Are Weight Gain and Nutrition Managed in Trisomy 18? What Does Mosaic Trisomy 18 on CVS With Normal Amnio Mean? Why Do Parents Need Karyotype Testing After Trisomy 18? Can Prenatal Ultrasound Predict Trisomy 18 Outcomes? How Common Is Trisomy 18? Pregnancy and Birth Rates How Do I Understand My Baby's Trisomy 18 Genetic Report? What Happens After a Trisomy 18 Diagnosis at Birth? What Treatments Are Available for Sleep Apnea in Trisomy 18? How Are Breathing Problems Evaluated in Trisomy 18? Can Blood Testing Miss Mosaic Trisomy 18? Other Tissue Tests Trisomy 18: How Are Swallowing and Aspiration Evaluated? What congenital heart defects occur in trisomy 18? Which Newborn Tests Help With Trisomy 18 Comfort Care? Where Is the Best Place to Deliver a Baby With Trisomy 18?

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References

References (24)
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This page explains comfort-focused care options for a newborn with trisomy 18 for informational purposes only and does not replace medical advice. Discuss your baby's symptoms, goals, and care plan with the neonatal and palliative care team.