If you work at a hospital or are a medical professional, please read this post.

Since Brielle’s diagnosis I’ve been working on how to care for anencephalic infants. From the recommendation of a neuroscientist friend, I bought “Fundamental Neuroscience” and “Atlas of Neuroscience.” I’ve spent weeks reading publications on PubMed, studying the brain, amniotic fluid, head trauma, anencephaly, how anencephaly occurs, etc. I find this all very fascinating and incredibly surprising how little is known about anencephaly. Quite frankly, nothing is known.

If you’ve been following my posts, you know that a few weeks ago a baby was given horrific care by a hospital in Tennessee. Why? Pure ignorance on how to care for an anencephalic neonate. So number one on my list was to establish a basic set of protocols for hospitals and practices to follow in regards to basic maternal and fetal/neonatal care. Number two, determine a way to to treat anencephalic infants with strong vital signs. Number three, find a way to treat anencephalic babies in utero and save their lives. Did I do this for Brielle’s sake? Absolutely, but I also did it for every other family in this situation.

Anencephaly is the most common neural tube defect, but 95% of the cases are aborted. That leaves only around 50-60 babies born a year in the United States. Very few physicians will see no more than a handful of cases in their career go to term. I think a big part of why there are so many abortions, is because parents are told their baby has no brain and is “incompatible with life,” they are presented with a situation that has no hope. This is something that needs to change, because these babies do have brains, and some of them do survive. For instance, the seventeen year old girl currently living with anencephaly. There is always hope.

I’m not sure if this is the right course of action. And this is definitely a more difficult plan, but we need to start somewhere. I propose we start here:

Fetal Procedures:
– MRI before 34 weeks for clear picture of brain matter before Tissue Factor is introduced in Amniotic Fluid at 34 weeks. (TGF is a suspected component of amniotic fluid that deteriorates brain matter after 34 weeks. By having MRI’s we can begin to see how fluid affects anencephalic brains and potentially when to deliver the baby for best possible outcomes.)
– MRI after 34 weeks to check on brain.
– Check for extracerebral hemorrhages and intracerebral hemorrhages via ultrasound or MRI. (This will better prepare the medical team at the time of delivery.)
– Colour doppler imaging to be done to monitor for AVM (arteriovenous malformation).
– Check for AVM, look to vein of Galen and frontal region of brain for AVM occurrence. This will be difficult in an anencephalic brain since their brains are organized differently.
– Continuous assessment of cardiac failure or hydrocephalus is required to monitor for AVM.
– Fetal behavior documented by mother. This needs to be known to better detect brain bleeds at time of birth.

Neonate Procedures:
– Vaginal birth increases risk of head trauma. Induction increases risk of head trauma.
– Delay cord clamping to reduce risk of brain bleeds. Specifically Intraventricular hemorrhage (most probable cause of death).
– Use of artificial dura and sterile gauze to cover brain. Dressing must be kept wet and baby must be kept warm.
– Monitor for signs of brain bleeds (could be six to eight hours before first signs present themselves):

– Fixed and dilated pupil. Eye will be positioned down and out on side of injury.
– Weakness of the extremities. Will be on the opposite side of the lesion.
– Loss of visual field. Will be on the opposite side of the lesion.
– Irregular respiration (apnea)
– Vomiting
– Confusion/lowered level of consciousness
– Seizures (especially if not seen in utero)
– Neck stiffness
– ECG/EKG (if showing other signs): Hypertension, Bradycardia, Cardiac arrhythmias, Cardiac arrest, Other changes
– Decreased muscle tone
– Lethargy
– Weak suck
– Excessive sleep
– Decreased reflexes
– Oxygen levels should be monitored
– BP should be monitored
– MRI to check for brain bleeds
– Regular state and federal required testing (this is important because this is currently not done for anencephalic infants)
Be aware that use of ECMO can cause intra axial brain bleed.

Maternal Procedures:
– Monitor for polyhydramnios during pregnancy.
– Monitor for amniotic fluid embolism during and after delivery. As well as during pregnancy.
– Increased risk for AF embolism with an anencephalic baby and polyhydramnios. This is due to neural debris in amniotic fluid.
– If the mother had polyhydramnios, monitor for postpartum hemorrhage.