Stories That Will Touch Your Heart, The Road Less Traveled

The NICU: The Loudest Quiet

by Mankia Sharma, MD

Editor’s Note: I invited Manika to write this article because I wanted someone familiar with a neonatal intensive care unit to share their experiences with coping with the death of a tiny infant. Although they are professionals often appearing stoic in their duties, in reality, they, too, are touched by grief.

Please be advised that some bereaved parents may find this story upsetting.

Noise is a constant part of the neonatal intensive care unit (NICU). Monitors, alarms, cries, laughter. Sounds mark every new life that enters the unit, every breath its current residents take. My first days working in the NICU served to change my television-fueled idea of a peaceful, quiet place dedicated to healing. Instead, I found controlled chaos. Everyone appeared in constant motion, there was always something that needed to be done. When a patient was critically ill, the room was charged with energy, on its toes for anything that may happen. But I also learned that silence does invade the unit upon occasion.

manikaThe loudest sound made in the NICU is that of the silence that cloaks a unit when a baby dies. This happens more often than any NICU member wants to admit, because it is the most difficult to discuss. The drapes are pulled, giving what privacy can be offered; we do our best to shut out the normal sounds of the NICU. And surprisingly, the rest of the unit understands and acts in stride. Life in the unit stands still in an effort to add its condolences. The staff makes every effort to blend seamlessly into the scene. The nurses adjust instruments around as quietly as possible. Often the only sound heard is the scratches of the doctors’ pens signing page after page of the death certificate and paperwork. Even other families who pass by the room of a grieving family know that things are different; they too walk quickly, soundlessly, to assure themselves their babies still live. Everyone’s heart aches for the family ensconced in that silent room, hunched protectively over a tiny body.

The tears that are often not seen are those that belong to the NICU staff. The obstetrics team asks us, the “baby doctors,” to meet with an expectant family when a preterm delivery or the delivery of a baby with known congenital anomalies is imminent. During this meeting, I tell the families that the baby, or babies, will become a part of my family. And I truly feel that this becomes the case. Many times, the first thing the baby sees immediately after delivery is my face. I have wondered what those wide eyes must see—the smile, the tired eyes, the concerned brow. The scientist in me recognizes that a preterm baby sees little more than light and shadows. But it is in that instant that a bond forms between that new life and me. When it becomes certain that a baby will likely not survive, the loss is that of a family member. The pain is just as striking. And yet, we the NICU staff feel that we must be stoic, we must hide our tears from the “real” family—we are not flesh and blood. We are only the sweat and will.

The concept of nurses and doctors remaining detached from the grief of a family during a patient’s death has evolved significantly. Now, we are trained to express our emotions, that it will help our healing and help the family as well. This is much easier said than done. Someone must remain in control, someone must fill out paperwork and gather the baby’s belongings and make the necessary phone calls. Too often, I am that someone. I focus on the clock. When we take away the machines and IVs and allow the parents to hold an infant for the first time, my clock starts. What time did we disconnect the ventilator? When did the baptism occur? How long ago did I give the last dose of morphine? When should I check on the family? How long should I wait to listen to the baby for heart sounds? When should I find the baby’s stethoscope? When is it ok to pronounce time of death? On TV, and in real life, we hear the doctor say “time of death…” when a patient officially dies. To this day, I have not been able to utter those words. They seem too final. They give power beyond my capacity. I will only say the time; to the parents, and to me, that is enough. In my mind, I did not decide when the baby took his or her last breath. I only recognize that it had been taken.

After the family has had its time with the baby, I often find myself enveloped into hugs, as if I were a member of that family. The repeated words of appreciation humble me and I am always at a loss for what to say. To me, I have just taken their most precious gift. My job is to heal, and I stand before them, stealing a life. But the gratitude I see in the family’s eyes, behind the tears, behind the grief, helps my own loss. I am often asked what it’s like to “lose a patient.” The death of a baby in the NICU is much more than the loss of a patient. As a medical team, we pour our hearts into each baby. Many of my call nights have been spent at the bedside of a sick baby, pacing, waiting for any signs of improvement of his or her condition. The NICU is such a foreign place to most people. So many of our parents do not have any idea of what to do, how to handle this new environment. Equipment and machines that seem to be from a science fiction movie fill a bare-walled room. In the midst of tubes, wires, tape, bright lights and constant sound lies a baby. Parents have remarked that they had to search through a jungle of technology to find their child, that they let their eyes follow the ventilator tubes. The monitors erratic waves and sounds become the only signs of life to many families; even some of our ventilators take away the normal rise and fall of each breath. It is the threat of silence that keeps the medical team motivated.

I give my patients pep talks, reminding them that there are people who depend on them, whose happiness is tied to them. Sometimes, it is not enough and these babies’ battle-worn bodies fail their strong spirits. There is a plea hidden in the depths of their eyes and an apology as well. I felt that I had failed the first patient who died in my care. My mentor at that time explained to me that we do not decide who lives or dies, we give only our support and our care. We are merely protectors for our patients and guides for their families. I still pass these words onto my colleagues in the time of loss, and I promise each day to live up to them. Our enemy is not death in the NICU, it is the silence that accompanies it.

Now, I smile each day that I walk into a unit full of chaos, as it reassures life. I smile at the crying baby whose life we were not guaranteed just weeks ago. And I laugh when I find myself covered with pee or poop—I cannot help myself, it is a sign of life and of the inevitable in my job. Along with most nurses and doctors, I come to work each day ready to accept any challenge, be it medical or emotional. Often, we give healing to each other, and someone is always attempting to bring smiles and laughs. But none of us can forget. Our halls are filled with memories, the walls lined with pictures of former patients who have grown up and beat all the odds. For many of us, however, the walk down the halls is a reminder of the patients who had not survived in each of those rooms. I remember the name of each baby who has died in my care, every final heartbeat for which I listened. The silence of each adds to the voice that becomes a promise to always help, always care, and always remember.

About the Author: Dr. Manika Sharma graduated with a Bachelor of Science (Biology) degree in 2003 from the University of Tennessee (Martin) and her Doctor of Medicine degree from the University of Tennessee (Memphis) in 2008. She completed her Residency training in Pediatrics at the Eastern Virginia Medical School/Children’s Hospital of the King’s Daughters (Norfolk, VA) in June, 2011.

Manika is currently doing a Fellowship training in Neonatology at the Pittsburgh (PA) Medical Center/Children’s Hospital of Pittsburgh/Magee-Women’s Hospital. Simply stated, she is a pediatrician doing further training to become a neonatologist. It requires an additional three-year program (after her three years for residency) where she will split her time between clinical work in the neonatal intensive care unit and in a research lab. Dr. Sharma’s research project looks at Neuroblastoma, which is the most common cancer in newborn infants.

Writing has been a hobby of hers since childhood. Although it has taken a backseat to her medical career, it is something she hopes to pursue more in the future.

Stories That Will Touch Your Heart, The Road Less Traveled

Mitochondrial Disease: The Story of Two Brothers

by Sarah Kopacko

Editor’s Note: At this time of the year, many of us look for someone we can help by making their life a little brighter or lightening a financial burden.  I ask each of you to read Sarah’s story and visit the Kopacko Family website to learn more about this terrible disease and the day-to-day struggles that Colin (age 4) and Jesse (age 1) and their parents must cope with. Please find it in your heart to make a small contribution to help them with medical expenses. Thank you!

Let me start out by saying that our sweet boys mean the world to us, and have taught us how important it is to enjoy the little things in life. Most people never get to meet their heroes, but we are lucky enough to have given birth to ours!

Everything started with the excitement of finding out that we were expecting our first baby who would be joining our little family in July of 2008. We gave birth to our first son, Colin, on June 19, 2008, and other than low birth weight and some blood sugar issues, he was healthy. We took our sweet little man home weighing just five pounds when he was five days old. He struggled to gain weight from the beginning, but it is when we first tried to introduce baby food that we realized there was a problem. He was not able to eat any baby foods, or table foods for that matter, without vomiting.

We started seeing one specialist after another as well as putting him in a therapy feeding group when he turned one. No one could figure out what was wrong, but he was labeled failure to thrive and we were told he had an oral aversion. He continued to struggle to gain weight and eat anything until he was two and a half and we ended up having to get a G-tube [a medical device used to provide nutrition to patients who cannot obtain nutrition by mouth, are unable to swallow safely, or need nutritional supplementation] for him on December 9, 2010 in order for him to survive. At this point, he weighed just over twenty pounds, which is what a typical ten to twelve month old weighs. Once he got his G-tube he started gaining weight and looking healthier by the month, however things were still not easy. More and more medical issues started showing up, but it was not until our second son was born that the doctors really started taking a look at our boys.

On January 28, 2011 our sweet Jesse was born. I, Sarah, knew right away we were dealing with the same situation, but everyone just told me to take a few months to let him grow before I start to stress. As Jesse hit two months old, Jason (Colin and Jesse’s daddy) and I started to realize more and more that we needed to get a doctor who was willing to help us figure this all out.

Jesse, much like his brother, was unable to accept most baby foods, and table foods were even harder to get his little body to digest. By the time he was one, both of the boys were with a new Gastroenterologist (a branch of medicine focused on the digestive system and its disorders) and we were testing away. We found that both of the boys had Gastroparesis, which means that they have a paralyzed stomach. This explained why they were not able to eat foods without vomiting or being in massive amounts of pain. While this was an answer, we knew it was not all that was wrong, something just was not lining up.

We put both the boys on an amino acid based formula, which is already broken down so the body does not have to work as hard to digest it, to try and help their bodies accept the formula without vomiting. We continued to search for answers for the boys other symptoms which included but were not limited to; excessive sweating no matter the temperature, heat intolerance, fatigue, muscle pain, leg pain, difficulty sleeping, low muscle tone, head ache, and gastroparesis.

By June of 2012, both boys were really struggling, but Jesse was starting to lose his ability to walk and talk. On August 22, 2012 Jesse was admitted to the emergency room because he could no longer support himself and was in desperate need of a feeding tube. He got his G-tube on August 28, 2012 after four days of being on an NG tube (the insertion of a plastic tube through the nose, past the throat, and down into the stomach) to gain strength for his surgery. When his surgery was done, he went into respiratory distress after waking from anesthesia which made an already scary day terrifying. After he was stable, a group of doctors came in and explained to us that they felt that both of our babies had something called Mitochondrial Disease (Mito), and our world was turned upside down yet again. At this point, both of our boys were put on continuous feeds for twenty three hours a day, and we started looking into private duty nursing to help watch over the boys at night so that we could try and get some solid sleep.

We had been in the tube fed world long enough to know a little bit about Mitochondrial Disease, and what we did know was scary. We knew more children die yearly of this disease than childhood cancer. We knew that there were many who had reached out to us in support whose children had already passed away. We knew that it was a progressive disorder that had no treatment, and all we could do was manage their symptoms as best we could. The fear that was within us was overwhelming.

We were told that the doctors there had not seen mitochondrial cases, and that we should look into seeing a specialist. Our options were Boston, or Dr. Kendall in Atlanta, Georgia, and we decided Atlanta would be best for us. Our appointment was set for November 21, 2012 which was the day before Thanksgiving. The worry seemed to get worse as the appointment got closer, and we began trying to raise money for the trip as it all comes out of our pocket. Over the years, the medical bills have been astronomical, and we decided it would be best to set up a website for the boys where we could update people as well as raise donation money for their medical bills, treatment, and equipment. We were blessed enough to raise just enough money to make the trip and start the process of getting more testing done on the boys in order to figure out the best way to help manage their symptoms.

Early morning on the 21st of November, we headed towards Atlanta to see Dr. Kendall, and we were full of both excitement and fear. The appointment was a whirlwind of information, and allowed us to let out a sigh of relief as she started to explain how we could try and better manage their pain, and also got the boys set to get fitted for special strollers to help them get out and about more. They have a slew of testing to go through in December, and will be starting something called a Mito Cocktail by January 2013. The cocktail is a vitamin mixture that both boys will be on in order to help slow the progression of the Mitochondrial Disease. We are hopeful that the next few months will bring both of our sweet boys some relief.

The past 4 years have been spent searching for an answer, and now that we have an answer.

It is something that does not have a cure or treatment

We are more focused now than ever to make our kids as happy and comfortable as we can. We want to thank everyone for the prayers and support that we have and will receive, and invite you all to visit our website to keep up with the boys.

Continue reading this story about Colin and his little brother, Jesse on the Kopacko Family blog. For more information about how you can help, contact Sarah, Colin and Jesse’s mommy.

*all definitions courtesy of Wikipedia