Sunday, April 29, 2012

Realizing the incredible frailty of life and the battle to avoid irrational exuberance: a journey into the NICU as a Med-Peds uncle.

It was September 2003. I was a recently Board certified Internist in Mexico, now repeating the residency training in the United States in a combined Internal Medicine and Pediatrics program. I was stepping for the first time in my life in a level 3 Neonatal ICU (NICU) at Metrohealth Medical Center in Cleveland, OH; a 40 beds state-of-the-art NICU, where miracles happen. Used to examine adults; used to palpate the abdomen with two hands; now my patients were smaller than my hands. I stepped into one of the rooms to see my first patient; a 24 week gestational age patient, born a week ago at age 23 weeks! As I approached the isolette, gusts of shivering invaded my body. I was anxious and scared; I was having an incredible mixture of emotions; I felt an incredible pride of being a physician as well as I was marveled by technology; nonetheless I suddenly felt I did not belong there. I was an internist trained to see adults with cirrhosis, lupus, rheumatoid arthritis, heart failure, diabetes, hyperlipidemia, etc. And now, I was in the "darkness" of an entirely unknown yet incredibly fascinating world.

Most  babies were in isolettes; however, others who required more hands-on approach were in open warmers. I came to see strange ventilators called "oscillators"; ECMO became a reality, not a fiction; and suddenly I found myself looking into numbers that were surreal....a blood pressure of 60/30???? a heart rate of 150????? that was "normal".

The most impressive thing happened when I opened the isolette and found that my patient was surrounded by a million lines and monitor cables, and his legs size were as thick as my hand ring finger and the arms were smaller than my pinkie finger and the body was thinner than my whole hand size! ....How was I supposed to examine this patient???? how was I supposed to flip him over? I was terrified of even giving my patient the slightest touch. The skin was red, transparent, I could see vessels, perhaps peristalsis. I felt inside my heart an immediate love for that baby, an immediate sense of tenderness, compassion, and acknowledge how frail, tiny and delicate my patient was. I felt an immediate commitment to be a guardian, a protector, an advocate for this tiny person's life. This challenge was as well very could mean that if I didn't liked the rotation, I would switch from a Med-Peds training to just Internal Medicine.

My attending physician (the main staff who supervises the residents and fellows in an academic medical center) was one of the most important authorities in the field, Dr. Satish Kalhan. I was terrified of not giving an adequate performance after being warned who he was. I ended learning a great deal from him and finding much needed inspiration to become a Pediatrician. We became great friends with mutual respect for one another.

Time passed by, and the only way I could obtain an additional income was "moonlighting" in the NICU, so over the next 4 years, I routinely "moonlighted"; sometimes when I was in the middle of an Internal Medicine rotation, I spent a single night in the NICU - an extreme Med-Peds experience. Fortunately, I was skilled - did intubations, placed umbilical lines, PICC lines, intravenous lines, did lumbar punctures, did neonatal resuscitation, etc. I loved it, not to the point of becoming a neonatologist, but yes to the point of enjoying being a Pediatrician.

Nine years later, I found myself in the NICU, this time not in Ohio, but in Des Moines, Iowa. My brother, who is a Pediatric Nephrologist (and one of the brightest physicians I know) and his wife who is a Family Medicine specialist and a Master in Public Health, had premature babies at a gestational age of 26 weeks.
I witnessed miracles in the NICU during my residency - lots of normal patients who were very premature who developed to be children with normal intelligence and with no learning disabilities. Of course that as a Med-Peds trained person, I saw as well a lot of complex care Pediatric patients with all ranges of learning disabilities and handicaps - but these were the minority. Most patients were able to pursue a normal life.

These tiny children in Des Moines are now my blood...are my brother's offspring!, the next generation in my family!, my parents' first grandchildren!, my grandmother first great-grandchildren!. When I met them an infinite sense of pride, happiness, love and tenderness invaded my body; similar to my first experience in the NICU, I got gusts of shivering and goosebumps from the emotion. However, now I felt an immense feeling of adoration for them.

I was very worried as before I landed in Des Moines, I came to know that both of them had NEC - necrotizing enterocolitis - a potentially life threatening condition that occurs in premature babies due to immature intestinal perfusion and poor barrier for enteral bacteria. My niece was doing fine and only required a small surgery. But my nephew was very ill - he had 23 cm of his bowel resected, had acute renal failure and oliguria, had coagulopathy, developed a liver hematoma and a subdural hematoma. Due to severe hypotensive episodes likely from overwhelming sepsis due to bowel perforation he developed a watershed infarct in the brain.

My niece was in an isolette, with nasal CPAP and tolerating enteral feeding, still with total parenteral nutrition. My nephew was in an open warmer; on dopamine and dobutamine - medications to keep his cardiac output and blood pressure; morphine to keep him sedated; phenobarbital to protect his brain and to control new onset seizures. He was in the oscillator. His abdomen was enlarged, distended, blue. He received a myriad of blood products to compensate for his coagulopathy and bleeding.
I was incredibly sad and disheartened by seeing a little person with the same face as my brother's, in such a frail and incredibly life-threatening state.

I prayed, had a lot of good thoughts, supported my brother and my sister in law. Asked to my friends in the social media to pray. Tried to bring positive energy while in the back of my head I had my medical knowledge kicking and stabbing my soul. I tried to debate between whether it was an irrational exuberance to provide all this care to this baby who had a very low birth weight and that all the scientific facts in the medical literature were against his odds of living, versus my incredible and gigantic love for him as an uncle wanting to be an advocate and steward for his life. So far, my brother, a Pediatric Nephrologist fought back the Neonatologist who wanted to withdraw support. This little kid had a big ally on his side so far!

I decided that it was not irrational exuberance, and I supported to give all to him. I told my brother..."he is tiny, yes, he has a bleeding in his brain...but Hashem makes miracles, the brain plasticity is great; let him fight and let's fight with him". The next day, my nephew urinated, his creatinine started coming down; he had a meconium string (a bowel movement - which is a sign of the bowel working); he was weaned off the oscillator to a conventional ventilator; he was weaned off dobutamine and dopamine! The power of prayer was working! We had doubts about the neurological prognosis due to the abnormal cerebral images in the head ultrasound and a presumed midline shift of his brain. However his head circumference was stable and his fontanelle soft; in addition he was grimacing and moving his four limbs symmetrically, so I thought this was reassuring.

My niece on the other hand, was tolerating trophic feeds and was now providing a lot of strength to all of us.
I left Des Moines and came back to Cleveland. I gave a lecture at a Transfusional Medicine conference in Phoenix; then came back to my regular professional duties at the Cleveland Clinic (from where I'm typing this blog post on a Sunday at 2AM, working as the Medicine Triage Officer). In Phoenix I required to call one of my Pediatric Neurology colleagues at the Cleveland Clinic to ask him for insight regarding the neurological prognosis. The CT scan of the head was very disheartening - he had either severe edema versus almost an hemispheric infarct in addition to the subdural hematoma. The prognosis was looking grim and sad, but still, with some hope for the rest of the brain to take over.

My brother called me several days ago, his voice was very "dark and sad"....he said...."the baby is having severe abdominal distention; the surgeon is not available now; he got a gastrograffin enema...and the gastrograffin came through his mouth...he is now in respiratory distress....keep him in your prayers please, we think this is it....". Immediately after he told me I felt a freezing sensation and cold in all my body. I prayed, cried silently (I have not been able to put a tear has been very contained and I feel a lot of pressure in my heart).

The next day he called me...."Samuel passed away at 3:45 AM, we were at his side...he stopped suffering". I can't believe how sad, disheartened, abandoned and helpless I felt. A myriad of images started crossing my mind remembering when I met him in the NICU, seeing his face so alike to my brother's, and how he fought through those 27 days of life. I prayed to Hashem to keep him peaceful with no pain, with no suffering. I felt the most  terrible pain I ever had in my heart. I adore these children. I felt terrible for my brother and his wife, for our parents, for our families....and for all the families who have lost premature babies in the NICU.

I debated on how cruel life can be...."is this fair? that I have given so much, that my brother has given so much as a Pediatric Nephrologist keeping babies alive, and we lost our child? this fair?....why?....why us?....". But as a non-religious but believer, I think Hashem has a reason for things to happen. Perhaps my nephew would have suffered from very debilitating disabilities from this complicated NICU course with poor neurological outcome. Perhaps this was for the best. Who knows.

How frail life is. How thin is the layer between life and death. We enjoyed him coming out to life, and so fast he went away. I realized how fascinating technology and science are, but how terrible and blinding they can be providing with false sense of hope. However...I admire the human power of having feelings and much you can love somebody you just met, but who you know you were waiting for him or her all your life.

This is a very difficult time for us as brothers, as a father (for my brother) and as an uncle (for me). This is hard, I have a knot in my throat all the time. A squeeze feeling in my epigastric and retrosternal area is constant. My tears are contained, haven't been able to cry....feeling like so but I can't. Trying to give strength to my parents, brother and sister-in-law.

As a doctor, as a Pediatrician, as an Internist I hate futility. I believe in preserving quality of life over everything else. I believe in the most intimate respect and veneration for human dignity. I'm not sure if this NICU battle was going beyond these principles, but now this is past. Now my nephew is resting in peace and his memory will always be in my heart. I love him so much, with so much intensity, with so much appreciation for his incredible fight for life. He taught me how you can be so tiny yet so strong. He made me recall my appreciation and respect for Neonatology specialists, NICU nurses but overall, for the families and the tiny NICU patients themselves.

Now, my dear and sweet niece, so beautiful, so precious, so frail yet strong, is doing well. I keep all my feelings and prayers for her to survive the NICU and be a happy girl. I will strive to make from my standpoint what I can to make her enjoy and cherish life, have her enjoy this wonderful world full of colors, music, happiness, cultural richness and heritage. Her life is so meaningful to me as my own life. Her life represents my nephew life as well. She is living for both. She is a daughter, a granddaughter, a niece! We all love her so much. I have incredible feelings of infinite happiness for her to be alive, and a simultaneous incredible sadness for my precious nephew to having pass away.

I am experiencing very intense feelings I have shared with my friends - I am so grateful for their support and prayers, for their words. Social media is powerful. I have been able to share this important event in my family with our friends and colleagues from all the world. There are people who I may have not seen in quite a while, but whom I like and appreciate; people from whom I have learned something and shared some period of my life. People who have made me become who I am. Friends and family whom I respect and I'm infinitely grateful for their existence and for being there. I am here for them as well. In anything I can help I will always be here for them too. This is the beauty of friendship, the beauty of family, the beauty of existing - being there for the other; help each other; give a word of encouragement; and as a human being looking always to do the good and do not harm - treat others as you would treat yourself.

So much has happened lately - I realize how frail we are - we should be grateful to be alive; to have normal children; to see them grow and become independent; we should be grateful to be who we are!; to walk; to talk; to see;  travel; to be able to exist for oneself and for others. My nephew didn't have that privilege. His sister will do. Now I realize once more to never take things for granted.

I found again some sentimentalism I have always had, and I strengthened my respect for life and death, for the dignity of life, for the value of family and friendship, and most importantly, my infinite respect for all those little patients who fight like champions to perhaps, one day, become the Neonatologists who will make miracles happen and give hope to other babies and their families.

Samuel Alexander Auron (3/30/2012 - 4/27/2012) Z"L. My love for you my dear is as infinite as the universe, we promise to take good care of your little sister. You have made me be a better person and I will always follow my main principle as a doctor....primum non nocere. (I hope our irrational exuberance didn't harm you).

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