Love Is A Battlefield

A recent New York Times article shed light on the phenomenon of post traumatic stress disorder, or PTSD. What made the topic unique was that it referred to a study from Stanford that looked at the incidence of PTSD, usually seen in survivors of war, rape, extreme physical trauma, etc, in parents of infants who were hospitalized in the NICU. Their symptoms, after leaving the NICU with babies in tow, included avoidance, hyperarousal and flashbacks or nightmares. One woman in the article is quoted as saying "The NICU was very much like a war zone, with the alarms, the noises, and death and sickness." Geez. That's harsh.

I've been thinking about this war zone analogy. Where do we as physicians fit in? I suppose we'd be like the generals, leading the weary soldiers through the battlefield, making strategic moves and countermoves, reconnoitering, losing some battles along the way but not for lack of a valiant effort. Are we then, the ones responsible for leading these parents into battle in the first place? I've written before about my struggle with knowing how much is enough or more than enough. In the NICU, this is an ethical dilemma played out on an almost weekly basis. Infants who are clearly not ripe for this world nevertheless are 'incubated' in our artificially created environment until their lungs can breathe air, their skin can protect vital organs, and they can process life sustaining nutrition.

Most level 3 NICUs will resuscitate infants down to 23 weeks gestation. In the case that delivery is inevitable, we are often asked to speak to the parents and give them outcome statistics and discuss their 'options', one of which is to only provide comfort care and not proceed with aggressive resuscitation. We ask them to make a decision, to tell us what to do. I can't imagine how unbelievably agonizing this choice of theirs must be. Or maybe it is an easy one, because how could a parent not want everything done in the hopes that their child will fall on the rare side of the statistical teeter-totter? But, we have an n = hundreds and they have an n = 0. The soldiers bravely follow the generals into battle, with limited understanding and information but with the desire to continue fighting for what they believe in.

We are so focused on caring for these infants that we often neglect the emotional trauma the parents are going through on a daily basis. And what about when the baby is ready to go home? Amid the joy and relief at finally being able to have their infant home comes the realization that they now have to care for an infant on various medications, juggle multiple specialist appointments, become proficient at tracheostomy care and be hypervigilant for any respiratory illness that might compromise their tenuous breathing. If they are lucky, they have the support of a partner and family close by. But not always. Thankfully, there is an online support community at shareyourstory.org through the March of Dimes. Check it out.