I don't often talk about work on this blog. Part of that is that I am really not at liberty to discuss too many details of my job (confidentiality and all), part of that is that when I am not at work, I don't particularly want to think about work, and part of it is that I know many people who read this blog are parents and I don't want to scare them (this is your chance to stop reading NOW). Part of the "not wanting to think about it" is the stress and pressure inherent in having a job that requires you to make life and death assessments and decisions about someone else's child and the other part of "not wanting to think about it" is knowing that a certain percentage of the parents I meet, despite our best efforts, are about to go through the worst time of their life. They are about to face the thing that breaks up some ungodly percentage of marriages. The thing that all parents fear from the minute they are told that they are going to be parents-- the death of a child. Their child.
Where I work we have what are called "primaries." They are patients that we sign up to be nurses for for the duration of their stay, either because we are asked by the parents, or because we feel moved to for whatever reason. A few months ago, I signed up for a set of twins who were a few weeks premature. My primary before them had been a baby who had been in our unit for ~6 months before she was "well enough" to go "home" (or, in her case, medical foster care). When I signed up for the twins I thought, great, this will be relatively short, they'll grow, I'll help mom learn to breastfeed them, and they'll go home. Then one of the two went from moderately unstable to critically unstable. We examined all the usual causes, but when none of them panned out, the medical team turned slowly to wondering if it was caused by a certain rare genetic disorder. A very preliminary test came back indicating that it very well could be and blood was sent from each twin to a specialized lab on the other side of the country to confirm the diagnosis. The test results were to take 3-4 weeks to come back (doesn't 3-4 weeks seem outrageous in this day and age?).
The first twin did not live to see the results come back, but his pattern of response to the one treatment that we could provide (which became less and less effective each time we used it) pretty much told us that he did, in fact, have the disorder. When it became apparent that he was not getting better and that we were just prolonging his suffering and death, his kind, incredibly loving parents made a decision I hope I never have to make, they asked us to withdraw support. After the first twin died, all eyes went to the second twin-- he had similar, but considerably less severe symptoms as his brother and, hope of hopes, they were fraternal and, therefore, not genetically identical.
I was not there when the first twin died, but I was there when the results finally came back. Despite being fraternal they both had the exact same genetic mutation, a recessive trait carried unknowingly by both of their parents (this means each child that they conceive has a 25% chance of having this disorder). Those that know me know that I am what you might call an "easy crier"-- I cry at stupid commercials, I cry watching Oprah, I cry watching stupid commercials during Oprah, you get the picture. When we sat in a crowded little room to tell the parents the results I was okay (as in not crying) until the dad started crying. In situations like that, I hate being an "easy crier" because to some it looks like I am trying to co-opt their drama, when I really just wanted to be there to support them and I have very little control over the tears. The day before, in a quiet moment just after the parents left, I had said to the baby "you're just going to have to get better, I don't think your parents can take losing you, too." I know I wasn't alone in my sentiments. The next day, before we gave them the news, there was this palpable mix of sadness and anger coming from each of the clinicians, even the ones who have been giving devastating news to parents for years. Why anger? Because this wasn't fair! Of course, losing a child never is "fair," but losing two to a disorder that each had 75% chance of NOT having seems even more unfair.
For the next several days, we watched the remaining twin carefully for the signs of deterioration we were sure would come. Then days stretched into weeks. He stayed the same, didn't get any worse, and got maybe slightly better. I say "maybe slightly" because there was a lower method of support that we didn't try for a long time because we were sure it wouldn't be enough to keep him stable, but when we finally tried it, he shocked us all and did fine. The line from Natalie Merchant's song "Wonder" where she says "And they smile as they see they can offer no explanation," still rings in my head when I think about him. As I type this, he is at home with his parents, he is still not well, but he is not suffering and from what I last heard he is no worse than when he was in the hospital and certainly has a better quality of life at home with his parents. He continues to amaze us all.
I have never been good at knowing what to say in situations where someone has lost someone they loved and, while there are certainly things you shouldn't say, I'm not naive enough to think that anything I say can make it any better or easier for them. When I saw the parents for the first time after their son had died, I gave them both a hug and said, with tears in my eyes (of course!), that I was so sorry. Later, I wrote them a little card with my memories of their son. He was only earthside for such a short time, I thought they could use all the memories they could get and I wanted them to know that I saw him as their son, as a person, and not just a patient.
I heard from a friend of mine in another state who recently suffered a miscarriage, after all that I went through with the family of the twins, it was tempting to issue a hollow "I understand." But the truth is, I don't. However sad I am for them, however much (in the case of the twins) I feared going to work each day that he was still in the hospital because I was afraid that would be the day that he took a turn for the worse, however much I still think about them and pray (in my own way) for them, it will never compare to their sadness and grief, their fear for his life, and the prayers they must silently say every minute of every day. Witnessing is not the same as experiencing. And as sad as I am for my friend, as much as I did pray for her (this is her second miscarriage), all I can do is be there to stand witness, witness that her child existed, witness that that child was loved and wanted, and witness that it can never be replaced.
I should mention that the story of my patient who, against all odds, is still alive and at home is not a complete cinderella tale, he is at home with some
"support" and he (most likely) will not survive this disease indefinitely,
but each day he does is a miracle and a gift and, as I remember my friend who just lost her unborn baby and those
that died 5 years and one day ago, I am humbled to remember that each day I live is
a miracle and a gift.
Recent Comments