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I cannot imagine anything harder than the suffering I see too many parents go through when their child has a fatal, progressive neurodegenerative disease. With the diagnosis they lose their child’s future just as suddenly and unexpectedly as if they were hit by a Mack Truck. However, instead of the process being over in any brief period of time, it is often drawn out over many years.
Leukodystrophies, Mitochondrial disorders, Inborn errors of metabolism, Rett Syndrome, Duchenne Muscular Dystrophy and a host of other heartbreaking diseases are a death sentence, only one that is indefinitely prolonged. In all these examples the child gradually loses abilities he or she once had. Read the rest of this entry »
His room was a shrine to his own memory, a eulogy for a still living, and breathing child. Pictures adorned the the door and the wall, smiling, vibrant, full of life. This boy last week was a healthy, happy, growing, developing two year old child. Colorful children’s crayon scribblings were placed at strategic intervals to liven up the cold, stark hospital room. Get well cards from extended family are also peppered around the walls. Over his crib, lies a recent portrait, the big smile and engaging eyes standing in stark contrast to the current blank stare. His limbs lay motionless, stiff, rigid, spastic, with toes pointed, betraying signs of a brain ravaged by lack of oxygen. He has been having seizures, with eye fluttering, and facial twitching about multiple times per day despite two anticonvulsant medications. This and breathing are the only spontaneous movements he makes. All this, the result of a single grape.
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