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.
Where do i begin? I am a virgin blogger and i'm feeling a bit voyeuristic as I read and continue to read. I am a fellow pediatrician who has experienced both sides of the neonatal dilemma. As a resident, I found myself tormented by the choices made by parents of extreme preemies. For most, there was no choice to make. Do everything was the typical response. It was a rare instance that palliative comfort care was chosen. I mean really, as mothers, we are born nurturers. It is our nature, literally. I remember one particular instance when the mother of a 23 weeker chose not to resuscitate. We brought the baby back to the NICU in an isolette. But how does one allow a life lived so short to live it alone? I held that baby for an hour until it finally took it's last breath. It changed me forever. Afterward, we delivered to the mother her final keepsakes- the baby blanket,hat, and a polaroid photo of her baby.
ReplyDeleteHow was i to know that i would in fact be faced with a similar decision less than 10 years later? In january, after spending 2 weeks in trendelenberg for 3cm of cervical dilatation with bulging membranes, my water broke at 22 weeks. We were faced with the decision of continuing the pregnancy with IV abx, waiting for sepsis to occur but hoping to gain a few more weeks, or induction. In the midst of utter devastation, I was strangely thankful. Thankful that i ruptured at 22 weeks. Thankful that the decision for me was relatively easy. I had mothered this baby as well as i had mothered any of my other 3. I had done everything in my power to ensure its safety. I had weathered two weeks of complete bedrest, catheterized and in trendelenberg no less. (Truthfully, i was no stranger to bedrest having done it for 5 months and 3 months respectively with my 2nd and 3rd pregnancies, but doing it on your head adds a dimension that is truly indescribable). Yet, here i was. Memories of residency tormented me for 2 days while i awaited my induction. Every fetal movement was a reminder of the healthy baby that I still held inside me. I felt betrayed by my own body.
Two days later, I delivered a 750gm baby boy at 22 2/7 weeks. I had a dear friend, who is also a photographer, at the delivery to take photos of my son, knowing that a few hours is not enough time to remember all the details of his tiny face, hands or feet. I wear his photo in a locket around my neck, so that I am surrounded by all my children.
Upon returning to work 6 weeks after my delivery, I was faced with having to walk into a newborn nursery. I stood outside the door to the nursery and took a deep breath, recognizing that while my whole world had stopped, the rest of the world continued as though nothing had ever happened. I closed my eyes, and turned the knob.