The In-Betweens: A Parent/Nurse Perspective on Children with Severe Disabilities 2016-11-16T08:38:28+00:00

The In-Betweens:
A Parent/Nurse Perspective on Children with Severe Disabilities

by Darshani Sukumaran

I don’t talk about the specifics of my work as a pediatric nurse too much. I work in a world where patient privacy is not only important for the sake of the patient, it’s the law, and it’s my license. So in sharing some of the joys and frustrations at work, I can never talk about, or even allude to, a specific patient. I have cared for so, so many patients that I can present a generalized opinion or description without talking about an individual.

darshaniWhat I can tell you is that I am honored to work with children who are the most severe, and medically complex kept alive by medical science. Many of them are one of a kind, or at least one in a million. They might have been born with a rare condition, or acquired it through accident or illness. They are all survivors.

Because I work at one of the best places to treat such children in our geographical area, we often see the same children over and over again. In the news there was this dad who was pushing his son with severe disabilities in a special wheelchair so he could experience triathlons. Well, as a pediatric nurse, I feel that my co-workers and I have pushed some of these kids through many races, sometimes uphill, sometimes impossibly hard. I don’t always expect them to make it (and sometimes they don’t). When you share an experience like that with someone, it changes both of you.

The Power of Caring

When I get a new patient who comes in very sick, we as nurses do all we can in our power to bring comfort to the child. Stress delays the healing process, for one thing. Nurses (when we are not running around like crazy) treat our patients in a holistic manner. We provide binkies and baby swings, give bed baths, and make sure the child has her favorite blanket. We give Tylenol or whatever is ordered for pain or fever. We swaddle, bundle, and tuck.

Sometimes we get children who are very, very disabled and have no family. We are not always sure where the family is, or what the circumstances are. They just don’t have family. Ever. Maybe it’s too painful for the family to care for this child who cannot seem to care back. Maybe their child is so complex that he has to stay in a pediatric nursing home. Maybe they have just given up and moved on. I cannot speculate. It doesn’t really matter—either way someone has to take care of these children.

And one of those someones is me.

Quality of Life

Quality of life is a touchy subject. You can’t fix them all. Sometimes their bodies are just broken. Their spirits may be very strong and intact, and that spirit can keep them going for a long time. But not forever.

I have asked myself over the years when I see people both at work and in the general population, who don’t have a good quality of life, where is that line that should be drawn between, “pull out all the stops,” and, “enough is enough.” When my dad was clearly not going to come back, it was easy to say enough is enough. When a person might have the chance at several more good years of life, pull out all the stops and treat aggressively if everyone is up for the battle.

What about the ones in-between? The ones who might linger for years—decades even?

Thankfully I don’t have to make that decision. But I care for the patients in-between, sometimes for years, while other people make decisions about when enough is enough. The line is not always easy to draw in these cases.

And what about the value of life? Not only to the patient, but also to those in the patient’s life? I suspect that their care takes a toll on families, and that’s why many of these children end up in nursing homes. It takes twenty-four hours a day of skilled nursing care, and insurance does not provide that in most cases. It also means you can’t easily leave the house—much less take a vacation. And what about the other children in the family who expect parents to attend baseball games and science fairs? Taking care of a child who has profound disabilities and is chronically ill takes its toll.

Finding Value in the Sickest Children

As a nurse, I have to see the flip side of a sad situation. Because if I only see the sadness, it’s easy to become disheartened in my job, which ultimately could affect my care. I have the luxury of clocking out at the end of my shift and going home and leaving the patient in the care of others. When it was my daughter who was sick (and she was not even nearly as sick as some of my patients—not nearly!) I often felt there was no escape from the demands of care. And yet this was my child and I loved her and it hurt me to see her suffering through this battle that I knew was temporary. What toll it must take on families whose children cannot ever get better. It is probably one of the reasons many of these children no longer have family.

It’s one thing to care for a patient who responds with a thank you or a smile or even just getting better. It’s another thing to care for a patient who is in her own world, who may be so far gone neurologically that she doesn’t recognize the voices of loved ones, who can’t move or talk or even focus her eyes or swallow or even breathe on her own. They come in year after year with the same types of infections (usually pneumonia, GI problems, or sepsis). And they are children. These children don’t march so easily into most people’s heart as the perfect-looking smiling children, but they still have a way of getting their way in there, if you happen to be one of their caregivers.

It’s true compassion (and my job) to find ways to comfort these children. Sometimes that means simply keeping them clean, turning them to the side where they seem to have the best vital signs, arranging their stuffed animals around them, dressing them in the clothes the family provided (if there is family), and making sure to put that cute hair bow on after their bath. I always talk to them even if I am not sure they can hear me or understand me. I explain what I’m doing and I chit-chat with them about whatever’s on my mind. If their family is there, I try to find something to compliment them about—she has such beautiful eyes, he has such thick eyelashes, her hair is so curly and cute, she looks so much like you, or even, I can tell how loved he is. You take good care of him.

Lives of Grace

Our society can be judged by how well we treat our most vulnerable members. Those who cannot give back to society, or even grace us with a smile. They have taught me patience. Some of them have been around for years. Each day must be an eternity for them. And yet they are so patient. They just keep going. They don’t complain much. I feel like I’m working with a child who already has most of her soul in Heaven and she is just hanging on to this world by a thin strand anchoring her to her body. They remind me of people who are in a deep state of meditation or trance.

I learn to read their bodies—contracted by lack of use, feet soft from not ever having walked, and as I bathe and change them, I get to know every skin fold and crease as they let me care for them. Some are fighters and hate diaper changes, and they grind their teeth and grimace. Others sit patiently while we turn them this way and that, get their diapers on, pull them up in bed, prop their limbs with pillows, suction their mouths and trachs, and tuck them in.

I know which ones are fighters and which ones are not. I know which side they prefer. Some of them I get to know so well that I can tell if they are not doing well by intuition or very subtle signs that someone who doesn’t know them would not pick up on. If his heartrate is getting just a bit faster, he may need pain meds, or he may want to change positions. That’s what I get for three and half years of caring for these children.

On the other hand, I also feel (and this is very controversial) that if there is suffering that cannot be alleviated, and there is no hope for recovery or comfort, conversations should be had between doctors and family to decide on a path of palliative care or hospice. Palliative care could continue for years, but it is unique that it emphasizes comfort rather than aggressive intervention while still sustaining life. It is for the patients who are in-between.

And they are patient, indeed.

They run a thousand marathons. Each day stretching out like endless footsteps, one foot in front of the other, one more breath in and out, one more crisis survived. And because I run it with them, I have become a wiser, stronger person.

This child who has never talked, or even made eye contact in some cases, the child who may never have had a visitor in all those years, has still changed lives. They have made a difference. Their lives have worth and value. At least to this nurse.

Author: Darshani Sukumaran • Date: 12/9/2014

About the Author

Darshani Sukumaran is a Registered Nurse who works with pediatric critical care, critical care step-down, and complex pulmonology patients at a large pediatric hospital. She has also worked in pediatric home health nursing. A former Technical Writer and then stay-at-home Mom, Darshani’s career as a Registered Nurse began with the medical journey of her own child. In her time off she enjoys journaling, knitting, and keeping up with her two daughters. 

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