© Yann Libessart/MSF
Uncharacteristic tears dripped from ebony cheeks to the sweat-stained crimson dress. Four days of labor pains had erupted through the surface of this culturally stoic South Sudanese woman. The MSF Maternity Unit of Aweil Hospital received her in referral for obstructed labor.
Ultrasound quickly identified the problem, a problem rife with excruciatingly hard choices.
The fetal head was 18 centimeters from front to back and 13 side to side. The female pelvis characteristically can only negotiate a fetus with a maximum diameter of 10 or so centimeters. The dark fluid filled head spoke to the diagnosis… Hydrocephalus.
A pregnant woman lies in the maternity unit at the Aweil hospital where Robert was working. Photo: Yann Libessart/MSF
Cerebrospinal-fluid is made in one part of the brain and then circulates through all parts of the brain and then around the spine, being absorbed, in part, along the way. If this system fails to develop properly and because the fetal skull is not fused, the increased pressure causes the fetal head to swell. Hydraulic properties being what they are, this fluid cannot be compressed, and the fetal head cannot be molded to fit the exit path.
In South Sudan, there are no resources for a baby with hydrocephalus
In nations more rich in resources than South Sudan, hydrocephalic babies are delivered by cesarean section and a shunt or tube snaked under the skin connects the fluid in the brain to the abdominal cavity. These tubes can get blocked, are prone to infection and need to be changed as the child grows. These children are subject to intense medical needs, a shortened life expectancy and frequent complications. Hydrocephalus is frequently accompanied by other malformations. In South Sudan, there are no resources for a baby with hydrocephalus and a medical recommendation to the family that they take such an affected child to Sudan, Uganda, or Kenya is at best both medically and financially unlikely, and in the rainy season impossible.
That's the baby. For the mom, cesarean section increases the risk of uterine rupture in subsequent pregnancy with resultant fetal and maternal death. Not a small issue in South Sudan where it is not at all uncommon to find mothers having had six, eight or even more children.
There's also the issue of consent. In general here, consent for surgical procedures on pregnant patients is given by someone other than the patient. This is usually the husband, who at times has more than one wife, but can be another male family member.
The best and hardest decision was made
The conundrum, choose to perform a cesarean section with certain adverse outcome for the malformed child, and put the mother at risk for all future pregnancy, or choose to drain the fluid allowing for vaginal delivery and create the same outcome for the fetus, but sooner.
Thus, the second round of tears, both mine, and those of the mother.
The best and hardest decision was made. Fluid was drained, fetus died. Mother delivered vaginally. Consent obtained by all. Deceased baby was found to have an additional large open spina bifida defect. In South Sudan, as in most places, this is incompatible with extra-uterine life.
The tight smile and thumbs up from the patient’s attending father, along with the assurances from all people present that the correct outcome, and best for this mother had been obtained, were poor comfort, at least to me.