From the Archives: Welcoming Life for an All too Brief Stay

First Published March 25th 2008

MS NBC has a beautiful little story about a relatively new phenomenon, perinatal hospice and the experience of having a child with a fatal prenatal diagnosis given before birth. (hat tip to PalliMed).

Scientists have now unlocked the entire human genome, madly dashing to figure out what the function of each piece is. As a result our ability to test for genetic disease has exploded for an entire host of conditions. Unfortunately, diagnosing is a lot different than treating or curing. Knowing what is coming most often does not include being able to treat it or improving outcomes.

In many ways this is a throwback to the medicine of past centuries. Back then, doctors didn’t have a lot of effective treatments, so they made house calls, they learned to comfort patients, and be of whatever assistance they could. Childbirth was vastly different then as well. Infant mortality was much higher. Names weren’t picked out until you knew the child was okay. Attachment and hope were much more cautious.

My chosen specialty is often like this, though less often than you might think. There is an old joke about neurologists being admirers of disease rather than treaters. This is becoming less true everyday, but like most stereotypes, maybe had a small kernel of truth at its base, now distorted and stretched by the generalization. The sad truth is, any pediatric subspecialty is going to have more than its fair share of heartache and incurable conditions. And so, my heart went out to this family. I can relate. We doctors have to learn to deal with grief too. We love to bottle it up and this has led more than one physician on the fast track to burnout.

It makes me wonder what the impetus is for developing these gene tests. Too often in Obstetrics, it feels like the entire point of prenatal testing is to abort the pregnancy should it be deemed “defective”. I know this isn’t always the case. Being given time to adjust, grieve and mourn a very real loss can be helpful to so many families in this situation. Often, the worst part for families dealing with childhood illness is not having a diagnosis. Even if you can’t treat it, there is real relief in giving it a name and description of what to expect. It is not my wish to stand in judgement of any parent who has faced such a very difficult situation. Certainly facing the choice of “terminating” vs palliative care is heartbreaking either way. I have to say I was absolutely floored by the video interview of this family and the courage they took in loving, embracing, and caring for their child with Edward’s syndrome for the duration of its very brief life.

It would have been so easy not to get attached. It would have been simple not to mourn. It is the default protection response of many. It is a form of denial, the first stage of grief. I think it stops the grieving process dead in its tracks, and can make a family sick. You never get the chance to try to make peace with the tragedy.

I think this story is a beautiful example of what can be gained by not giving in to this impulse. In short, families are allowed to grieve, to cherish a memory and their short time with the baby. Then they can heal. Sometimes we need to allow pain to wash over and immerse us in order to move on and be healed. We need to grieve, and grieve fully.

The number of families that choose to carry a pregnancy with a terminal diagnosis to term is unknown, but definitely a small minority. They face family and friends who are often baffled by their decision not to terminate. One small British study showed that the number of families who choose this options reached 40% when perinatal hospice is offered. This tells me there are many who would like to see, spend time with, and know their infant and be able to tell them good bye. They just need a little help and support in doing so. What a wonderful cause.

Anyone who is interested in learning more, supporting, or referring a friend to perinatal hospice can find information at Http://www.perinatalhospice.org

Points of Interest, #32

A thousand apologies for my light posting of late.  My work among the sick and infirm has cut deeply into my writing and pondering time.  However, I will post as I am able.  In the mean time, here is a treasure trove of great stuff from around the blogging world for your enjoyment.

Medicine and Gallows Humor

In Child neurology we are required to do a year of adult neurology. This is a year of complete culture shock. Children’s hospitals and adult hospitals are two completely different worlds. It is interesting to see the adult neurology residents complain about how chipper and upbeat the pediatrics people are. This is an odd complaint, until you realize adult neurology residents feel completely out of their comfort zone in knowing how to manage the patient. fear and discomfort are only augmented by sleep deprivation and being pulled in several directions at once, as you tend to be on call, Perhaps they can be forgiven when they really find it difficult to draw enthusiasm when awoken at 3am to hear about some “kiddo.” For me, being out of my element with adult patients is an even greater culture shock. Going from chipper to somewhat cynical and demanding is worse than the other way around.

The culture shock is particularly profound the Neuro ICU. For one thing, it is a prime site for so many spectacularly horrific things. While children with neurlogic problems can be heartbreaking, somehow I manage to deal with it. There is something about dealing with severe traumatic brain injury, brain tumors, stroke and brain hemorrhage all day that is particularly soul killing. The place is just saturated with death and loss. It was here I came to understand the phenomenon in medicine that is gallows humor.