This is the story of our daughter Jinan (November 15, 1996 – March 24, 1997):
In an apparent state of denial, I was totally taken by surprise when my assistant handed me the phone, although somehow, deep inside, I had been expecting to receive such a call one day.
It was 1:30 p.m. on an early spring afternoon in Cape Girardeau, Missouri, a beautiful college town on the Mississippi River. The caller was the on-call physician at the local ER. He was having a hard time saying what he needed to say.
"Dr. Aldasouqi,” he began with an unmistakable tone of sympathy, “Sorry to bother you, but I think, I am not sure I know what to do with your child," he said.
My assistant was thinking the call was regarding one of our brittle diabetic patients presenting to the ER with diabetic ketoacidosis. That would be a typical ER call during office hours at our busy private endocrine practice; DKA is the most drastic emergency in our specialty. My assistant never imagined this was a personal call for me and as the next of kin, not as the treating physician.
"Which child?" I asked, initially as if I had no children, but then immediately remembered that I had four children.
"Your sick child, Jinan," he replied. "She is basically dying, and your wife asked me to call you to verify the code status."
My wife and my daughter in the ER at 1:30 in the afternoon? I had just been at home for lunch, and Jinan was OK — well, relatively OK, stable. She was then receiving her physiotherapy, temporarily freed from all the wires and tubes, with two caring physiotherapists who regularly provided therapy at home three times a week. It was known at the hospital that Jinan had a DNR code status, but apparently my wife felt she needed to, finally, verify that with me.
When I left the house, Jinan was as she usually was: breathing at 40 times/min with a crackling noise that would be easily audible throughout the house, feeding via a percutaneous endoscopic gastrostomy tube, struggling to follow objects by moving her entire rigid body, and unable to stop the ever-increasing rapid successive eye movement, a sign of brain damage.
Jinan was little over 4 months old. She was born with schizencephaly, a rare congenital anatomic brain disorder. We were told, and we read later, that there were only few case reports and case series about this condition in the medical literature. During fetal organ formation and cell migration, clefts would develop in the brain, replacing various areas of brain matter at random. The newborn infant would have various neurologic defects corresponding to the anatomic locations of the clefts. Most affected children end up mentally and physically disabled, and many die in childhood.
Although she was born at full term, Jinan was small for gestational age compared with her siblings. This was the first ominous sign that something was wrong. As I was attending her birth, the most heartbreaking clue was the fact that unlike all other newborns, Jinan did not cry then or ever thereafter; among several other defects, she had vocal cord paralysis, explaining her inability to cry. As I was helplessly trying to reassure and comfort my recovering wife, our pediatrician came into the room and announced the immediate transfer of Jinan, by air, to a highly equipped university hospital in St. Louis. She rapidly developed respiratory distress due to choking and inability to swallow her mouth secretions, apparently related to neurologic dysfunction of her throat muscles.
That night, my family of six slept in four different places: my wife in the obstetric ward, Jinan in the NICU, our three other children at a friend's house in Cape Girardeau, and I spent the night in the hospital guest house after staying at Jinan's bedside till late in the evening.
As if this trauma were not enough, we were hit hard shortly thereafter. While we, the whole family, were driving up I-55 to visit Jinan the following weekend, a thunderstorm hit the St. Louis area. As a result, we were involved in a 12-car accident. Our new minivan was severely wrecked, but other than mild seatbelt and airbag injuries, none of us was significantly hurt. However, to add to our calamities, we could not see Jinan that day. All of that happened just 1 month after l began my first job after several years of medical studies and training back home and in the U.S. — a totally new life in a new town, new state, new everything.
Jinan was discharged after 3 weeks and was subsequently hospitalized four times before this final ER visit, expectedly for aspiration pneumonia. At home, we turned one of the children's bedrooms into a virtual ICU with monitors, pumps, nebulizers, humidifiers, and so on. To my wife, a former registered nurse, this put her back to work after 10 years of staying at home, but with much longer working hours and total mental and physical exhaustion.
On top of all of this, came the inevitable, terrifying moment of making a decision on Jinan's code status. The latter is a medical term that physicians, nurses and other members of the medical community use to describe the condition of terminally ill patients. The status, usually made official and clearly visible in the patient’s medical record, will direct attending health care providers as to what to do in case the patient stops breathing or has a cardiac arrest. This is usually the case in older folks with multiple, hopeless, crippling conditions or in those with terminal cancer. Physicians usually reach this stage after having ensured that all necessary measures were taken to ascertain that no reversible conditions were missed. Then they discuss this decision with the family members, and/or less commonly, with the patient, provided he or she is competent to make such a decision. In other cases, some older patients may have advanced directives, indicating, among other things, their code status. The status is either full code or no code, which means “DNR,” do not resuscitate, or “DNAR,” do not attempt resuscitation.
In case of a full code, all measures are taken to attempt to revive the patient who has a cardiac arrest, hoping not only to revive the heart, but, as importantly, to avoid brain injury or death, which may occur prior to initiating resuscitation if the arrest persists for more than few minutes, or during resuscitation. The resuscitation measures are collectively referred to as cardiopulmonary resuscitation. Typically, they include external chest compressions to the heart, putting a breathing tube into the trachea and connecting the patient to a breathing machine, and utilizing all appropriate drugs and procedures to activate the heart.
The DNR status calls for none of the preceding measures, or to “let the patient go, mercifully, in peace.” For people working in health care, DNR is an everyday possibility; they understand the reasons behind it. They routinely observe the “tortures” of futile measures to prolong lives (in days or months) of patients in vegetative states or after failure of CPR to prevent brain injury. People outside health care may be unfamiliar with DNR; to them, it may sound unjustified. Some may deny doctors “the right to decide who should live.” Needless to say, this issue presents many ethical, religious and social dilemmas.
After repeated hospitalizations, and with the progressive deterioration of Jinan’s physical and mental conditions, our pediatrician, with obvious care and sympathy, raised the DNR issue. To me, this would sound like an easy task, having been in this situation routinely in the daily practice of medicine; however, it was not easy at all. As internists, we deal with dying older people; here, it is the other end of the spectrum, the beginning of life. Being on the receiving end of the physician-patient relationship is apparently another compounding factor.
But the most difficult situation was, expectedly, what Jinan's mother would say in this regard. Wafa, my wife, had been in such situations before, having worked as a head nurse on a busy medical ward. But even today she thinks that she would wish for Jinan to stay alive no matter what kind of a life she would live. That is, of course, part of human nature, a mother’s instinct. After long hours of discussion, counselling with friends, and ascertaining adherence to religious teachings, we both approved the DNR code status.
While playing back the details of these sad events years later, I still feel the warmth of the unforgettable support of the people around us: friends, neighbors and coworkers. At the time, we had absolutely no close relatives in North America, having immigrated from another continent. While the house quickly filled up with flowers, they all made us feel as if our extended family members were with us. They would take turns providing meals, and they would provide babysitting for the kids and professional nursing care for Jinan, to give Wafa a break. We will never forget those gestures.
"Yes, Doctor, I reconfirm the DNR code status. Let her go in peace," I finally responded over the phone. I then rushed to the hospital to see my wife carrying Jinan, who was calm and still warm, and freed forever from all the tubes and the wires. I realized that she was gone forever when I did not hear the crackling, rhythmic, breathing.
“Jinan” means paradise in Arabic. She was born on November, 15, 1996, and passed away on March 24, 1997. Jinan now rests in the children’s section at Indianapolis New Crown Cemetery, and we now live hundreds of miles away. We always try to travel on any occasion to visit her grave site. Other beautiful memories of Jinan are the small dogwood tree carrying her name, planted at the entrance of St. Francis Hospital in Cape Girardeau, the plaque with her name hanging in the memorial hallway of the same hospital, and the memorial contribution of Dr. Stephen Whitten to the Southeast Missouri Hospital Children’s Program.
And the best part about memories of Jinan, kind of a happy ending to this experience, is that our family has been blessed with a beautiful little angel, Malak (“angel” in Arabic), born a year after Jinan's passing. Malak is now 18 years old, healthy and smart with a great sense of humor! Malak has just started college at MSU, becoming the fourth Aldasouqi Spartan and the last one still in college. MSU is a family tradition: My affiliation with MSU began in 1992, when I began postgraduate medical training at Hurley Medical Center, Flint, which is a community hospital affiliate of MSU. Most delightfully, Malak was my 39th birthday “heavenly” gift, born exactly on my birthday, so April 20 is a double-hitter at our house.