Heartbreaking decisions in early births

Heartbreaking decisions in early births

By Dr. Joan Okemo, Consultant Obstetrician Gynaecologist at Aga Khan University Hospital

NAIROBI, Kenya, Oct 19 – No one imagines or wishes for any challenging situations in pregnancy, but for some families it can enter deeply into uncertain territories: the realm of periviable birth. Typically defined as the period between 20 and 24 weeks and 6 days of gestation, periviability is a time when a baby born prematurely faces immense challenges, survival is far from guaranteed, and the decisions parents and medical teams must make are among the most emotionally complex imaginable.

Periviability refers to the gestational stage where a baby has a chance, however slim, of surviving outside the womb. Most medical resources cannot support a baby born this early. Yet a pregnancy may inevitably end during this period, or delivery may be necessary to protect the mother’s life. These thresholds are not fixed; they shift gradually as medical technology advances.

Babies born this early carry a high risk of mortality or severe lifelong complications, including cerebral palsy, learning difficulties, chronic lung disease, and sensory impairments. This period is widely described as a gray zone because outcomes are highly variable and the ethical questions deeply personal.

Understanding why periviable births occur is essential, both for prevention where possible and for honest counseling when prevention is no longer an option. The causes are varied, and often more than one factor is involved.

The most common pathways include spontaneous preterm labour, which often has no single identifiable cause, and preterm premature rupture of membranes (PPROM), where the amniotic membranes rupture before labour begins. At periviable gestations, PPROM frequently leads to labour, serious infection, or severe oligohydramnios, a critical reduction in amniotic fluid needed for fetal development. Cervical insufficiency, characterized by painless cervical dilation, is another major cause of second-trimester losses and very early preterm births. A cervical cerclage, sometimes called a McDonald stitch, may be attempted to support the cervix, though it is not always successful.

There are also circumstances in which delivery becomes necessary to save the mother’s life. These include severe preeclampsia, eclampsia, HELLP syndrome, severe antepartum hemorrhage, maternal sepsis, heart disease, renal failure, severe autoimmune diseases such as lupus, and certain cancers. In these situations, the mother’s survival is rightly prioritized, even when the implications for the baby are grave.

At times, it is the baby’s condition that necessitates early delivery. Severe fetal growth restriction, major congenital abnormalities, and fetal distress may require intervention to prevent intrauterine death. Intrauterine infection can also trigger both PPROM and preterm labour and requires prompt delivery regardless of gestational age because continuing the pregnancy poses serious risks to both mother and baby.

Multiple pregnancies carry a significantly elevated risk of periviable birth. Uterine overdistension increases the likelihood of preterm labour and PPROM, while hypertensive disorders such as preeclampsia may necessitate early delivery. Other contributing factors include smoking, substance use, poor nutrition, short intervals between pregnancies, psychosocial stress, limited access to antenatal care, and structural abnormalities of the uterus or placenta. These factors should not be used to assign blame but rather highlight the importance of addressing the social determinants of health.

Decisions at the periviable threshold require balancing the likelihood of survival, the risk of significant long-term disability, the mother’s health and safety, family values and beliefs, and the availability of medical resources. There is rarely a single right answer.

Medical professionals must grapple with questions that go far beyond clinical protocols. Should resuscitation be attempted? Should care focus entirely on comfort? What truly serves the best interests of both mother and child? These are not merely technical considerations but rather, they are profoundly human ones, shaped by the weight of individual circumstances that no guideline can fully anticipate.

Experience in periviable care teaches an important lesson: the same medical scenario can require entirely different responses depending on the family involved. A mother who chooses aggressive intervention at one periviable birth may arrive at a different decision in a future pregnancy at a similar gestation. Prior trauma, financial hardship, the emotional impact on siblings and partners, and memories of a prolonged and painful journey all shape how families weigh their options.This is not a failure of medical counseling. It is a reminder that periviable decision-making is never purely clinical. It is biographical, relational, and shaped by time and experience.

Several important lessons emerge. One of the most important is that survival cannot be the only measure of success. Quality of life for the baby, the mother, and the entire family must be part of every honest conversation. A decision to pursue comfort care is not a lesser choice; it can be a deeply considered and humane one.Equally important is the need for truly informed consent. Families deserve complete, honest, and compassionate counseling that presents realistic statistics without stripping away hope and respect their capacity to make their own decisions.

Another key lesson is that past experiences matter and must be acknowledged. When a family has walked this road before, their history matters. Grief, financial hardship, relationship strain, and psychological trauma from a previous periviable birth are not peripheral; they are central to the current conversation.There is also a need to recognize that financial and psychosocial support are part of medical care. The economic cost of prolonged neonatal intensive care can be catastrophic, particularly where social safety nets are limited. Healthcare systems must honestly reckon with this reality.

Finally, periviable care reminds us that grief is not linear, and support must not be episodic. Whether a family chooses intensive intervention or comfort care, loss in this context is profound and complex. Grief counselors, psychosocial support teams, and long-term follow-up care are not optional extras; they are essential components of periviable care.

As a clinician working in this space, I have observed that for a mother navigating these waters, the question is never simple, and walking away is never truly an option. The least we can offer is to walk alongside her, with honesty, compassion, and without judgment.