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PubMed This is a summary of 22 peer-reviewed journal articles Updated
Obstetrics

Pregnancy Options: TFMR and Perinatal Palliative Care

At a Glance

Because iniencephaly is a lethal condition, pregnancy management focuses on the mother's health and the family's wishes. Parents typically choose between Termination for Medical Reasons (TFMR) or perinatal palliative care, weighing options for memory-making against severe maternal health risks.

When you receive a diagnosis of iniencephaly, you are faced with making incredibly difficult decisions in a very short amount of time. Because iniencephaly is a lethal condition, the focus of your care shifts from standard prenatal treatment to managing the remainder of the pregnancy in a way that respects your family’s values and protects the mother’s health [1][2].

There is no right or wrong choice—only the choice that is best for you and your family. Generally, parents explore two primary pathways: Termination for Medical Reasons (TFMR) and Perinatal Palliative Care.

Maternal Health Considerations

Regardless of which path you choose, it is important to understand the physical risks to the mother. Iniencephaly can cause specific pregnancy complications:

  • Polyhydramnios: This is an excessive buildup of amniotic fluid around the baby, which can cause the uterus to become overly stretched [3][4]. This increases the risk of preterm labor and complications during delivery [3].
  • Obstructed Labor (Dystocia): Because the baby’s head is fixed in an extreme backward-tilted position (retroflexion), it may not fit through the birth canal easily [1][5].

Pathway 1: Termination for Medical Reasons (TFMR)

TFMR is a medical procedure to end the pregnancy when a lethal anomaly is diagnosed. The method used often depends on how far along the pregnancy is and your personal health history [6][7].

  • Dilation and Evacuation (D&E): Usually performed in the second trimester, this is a surgical procedure done under anesthesia. It is typically a shorter process, allowing you to avoid the physical experience of labor [6][8]. However, it is critical to know that choosing D&E generally limits the ability to see or hold the baby intact after the procedure, which can affect memory-making options.
  • Labor Induction: This involves using medication to start labor so you can deliver the baby vaginally [6][7]. Many parents choose this option specifically because it allows them to hold their baby, take photos, and collect footprints. While it involves labor, contractions, and a vaginal delivery, the physical recovery is typically faster than a full-term 40-week birth, though the emotional recovery is profound [9].
  • Feticide: In some cases, especially later in pregnancy, a procedure may be done first to ensure the baby’s heart stops before the termination begins [10][11].

Pathway 2: Perinatal Palliative Care

Some families choose to carry the pregnancy to term (or until labor begins naturally). Perinatal Palliative Care (PPC) is a specialized medical approach focused on comfort and quality of life for the baby and support for the family [12][13].

Important Risk of Carrying to Term: If you choose to carry to term, you must be aware that the baby’s “stargazing” head position creates a very high risk of obstructed labor [1][14]. This means there is a strong likelihood you may need a Cesarean section (C-section) [15]. This involves undergoing major abdominal surgery for a baby that will not survive. This is a crucial factor to consider for your own physical safety and future fertility.

If you choose this path, your team will help you create a birth plan focused on “comfort care” [16][17]. This may include:

  • Immediate Bonding: Ensuring parents have time to hold, bathe, and dress their baby [16].
  • Symptom Management: Keeping the baby warm, dry, and pain-free [16][18]. Life-sustaining interventions (like breathing tubes) are typically avoided.
  • Memory Making: Collecting keepsakes like handprints, footprints, or professional photography [19][20].

Your medical team—including obstetricians, neonatologists, and palliative care specialists—will work with you to ensure that your baby is treated with dignity and that your family’s needs are met throughout this journey [21][22].

Common questions in this guide

What are the maternal health risks of carrying a baby with iniencephaly?
Carrying a pregnancy with iniencephaly carries risks like polyhydramnios, which is an excess of amniotic fluid. Additionally, the baby's extreme backward-tilted head position greatly increases the risk of obstructed labor and the potential need for a C-section.
What is the difference between D&E and labor induction for TFMR?
Dilation and Evacuation (D&E) is a surgical procedure done under anesthesia, which typically limits the ability to hold the baby intact. Labor induction involves using medication to start labor for a vaginal delivery, allowing parents to hold their baby and collect physical keepsakes.
What does perinatal palliative care involve for iniencephaly?
Perinatal palliative care focuses on providing comfort and quality of life for the baby immediately after birth. This involves immediate bonding time, keeping the baby warm and pain-free, and creating keepsakes, while avoiding invasive life-sustaining interventions like breathing tubes.
Will I need a C-section if I carry an iniencephaly pregnancy to term?
There is a very high likelihood that a C-section will be necessary. Because the baby's head is fixed in an extreme backward-tilted position, a vaginal delivery is often obstructed, meaning surgical delivery is required to protect the mother's safety.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What are the specific maternal health risks if I choose to carry this pregnancy to term?
  2. 2.Is there evidence of polyhydramnios (excess amniotic fluid) on my scans right now?
  3. 3.If we choose TFMR, what are the differences between a D&E and labor induction for my specific situation?
  4. 4.If we choose palliative care, what kind of 'comfort care' measures are provided to the baby immediately after birth?
  5. 5.How does the baby's 'stargazing' head position affect the safety of a vaginal delivery?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (22)
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    Surgical Outcome in an Iniencephaly Survivor: Case Report and Review of the Literature.

    Khatri D, Gosal JS, Joseph J, et al.

    World neurosurgery 2019; (129()):105-109 doi:10.1016/j.wneu.2019.05.202.

    PMID: 31150861
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    A Fetus with Iniencephaly Delivered at the Third Trimester.

    Tanriverdi EC, Delibas IB, Kamalak Z, et al.

    Case reports in medicine 2015; (2015()):520715 doi:10.1155/2015/520715.

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    Prenatal Diagnosis and Pregnancy Outcome Analysis of Polyhydramnios.

    Liu LL, Pang LH, Deng BY

    Fetal and pediatric pathology 2016; (35(1)):21-8 doi:10.3109/15513815.2015.1122127.

    PMID: 26720631
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    Causes, management and outcomes of polyhydramnios at a secondary level hospital in Cape Town, South Africa.

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    Clinical Care Pathways for Second and Third Trimester Termination of Pregnancy for Medical Reasons in Canada.

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    PMID: 39855395
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    [Medical termination of pregnancy by mifepristone and misoprostol - evaluation of succes rate, complications and satisfaction of patients].

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    PMID: 26741161
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    Comparison of groups with medical and surgical terminations of pregnancy.

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    Men's experiences and need for targeted support after termination of pregnancy for foetal anomaly: A qualitative study.

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    Medical First-Trimester Termination of Pregnancy with Massive Fibroid Uterus.

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    "Yes to Life" and the Expansion of Perinatal Hospice.

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    Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses.

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    Perinatal palliative care in low- and middle-income countries: a scoping review.

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This page provides educational information about pregnancy options following an iniencephaly diagnosis. Always consult your obstetrician and maternal-fetal medicine specialist regarding the safest medical choices for your unique situation.

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