I am still here because my son died undiagnosed before they knew :-(

---

His were the first pair of newborn eyes that I gazed into during those early seconds after his arrival into this world and the first time I knew love like I had never known before. I knew that being a mother would forever be the most important thing in my life. Looking back, I am happy that I did not know what would lie ahead with his health. During those getting to know you early years, he was the most cuddly and busy little rascal any parents would be proud to have.

When he was almost two years old I had taken him to the doctor for a recheck on his ears after being medicated for two weeks for an ear infection. The nurse, LPN, was checking his vital signs prior to the doctor coming in and asked me if I knew that Phillip had a heart murmur. Now this was my first child and I admit that I may have panicked at the simplest of things so this concerned me more than it should have. But when the doctor checked him he said that he did not hear a heart murmur and there was nothing to worry about. I often kidded myself years later that he probably had written on the inside of the chart that this child had a neurotic mother.

A year later he was seeing a new doctor who said that he had a “functional heart murmur” and assured me that many children and women have them and without any apparent problems there was no reason to worry. This same year I was an Associate degree nursing student in my last semester of my program and studying the cardiovascular system. My husband had joined the army and so Phillip often slept in my bed. While studying heart sounds I used my stethoscope to listen to Phillip’s heart when he slept. I realized that his heart rate was much slower than my textbooks said that it should be for a 3.5 yr old child. It was about 40 beats/minute and the textbooks shouted out to me that “normal” was 80-100 at rest. I could barely breathe or sleep the rest of the night. I approached the Director of the Nursing Program the following day with this observation. But she assured me that there was much variation and there was no need to worry.

After my graduation from nursing school and in preparation for our move to Texas from my native central Florida to join my husband who was now stationed at Ft. Hood I took our two sons to Patrick Air Force Base for annual check ups. Phillip was four yrs old and Gregory was one and a half yrs old. I told the doctor about the functional heart murmur and he did a thorough exam. I am imagining that he noted the slow heart beat but did not want to alarm me. He said that we should do an ekg just to have as a baseline. So it was done that day. No one called me or notified me of results. Several months later just before our move to TX I went to the Air Force Base to collect our medical records for transfer to Ft. Hood. While standing in the elevator, I just happened to open Phillip’s chart and saw that the ekg revealed third degree heart block. I nearly passed out. I still was not a seasoned Registered Nurse, but I did remember from my schooling that third degree heart block meant sudden death often in the intensive care units. I went to the pediatric clinic to try to get an explanation. I was told that Phillip’s third degree heart block would be assumed to be congenital since acquired was the more dangerous arrhythmia and that they would not have a cardiologist specialist at the base until September. We were to move to TX August 1st. So I don’t have to tell you that I experienced some sleepless nights worrying about what life would be like for my first born baby.

After arriving in TX and starting my career as a brand new R.N. on an orthopedic unit, Phillip was seen by a cardiologist in the attached clinic in the teaching hospital where I worked. The doctor explained that congenital third degree heart block was rare and that we would keep an eye on him and if he had any problems that he would be referred to a Children’s Hospital in Houston that was about four hours away. Approximately 6 months later while I was getting ready for work in the morning Phillip woke up and vomited and then laid back down and went right back to sleep. This was very unusual for him so I did the only thing that came to mind at the time….. I took his pulse. It was about 30 beats per minute. I wasn’t totally alarmed since I had been working as a nurse for a short time and realized that he was not in distress. I did call the doctor when I got to work to report it and he decided that it was time for Phillip to be seen in Houston.

Echocardiogram, EKG, overnight holter monitor and a thorough physical exam were done there and I was told that “Phillip might not have his first problem from his slow heart rate for 6 months or 6 yrs…. No way to determine. But his first symptom could also be his last—sudden death.” He recommended that he enter into a clinical trial for Medtronics multi-programmable and two lead pacemaker. This pacemaker would allow one lead to be implanted in the atrium and the other in the ventricle and that it would allow Phillip’s heart to work like anyone elses. Poor baby had multiple complications and ended with 5 surgeries and three new pacemakers within 12 weeks. The final one being implanted in his abdomen the day before his 6th birthday. My husband was now stationed in Germany. I asked that he be given compassionate reassignment to Ft. Hood as we had no other family there and I was still worrying. Since the U.S. was not involved in a war at the time they offered him honorable discharge instead.

Phillip had a fairly “normal” childhood and we both settled into life with his pacemaker. He had more checkups and had pacer checks that other kids didn’t have to deal with but his love was playing soccer and working at the Boy Scout summer pool at Camp Tahuaya each year. I think that I mentioned that he could be a rascal. Well, he was like any healthy boy and got into just as much mischief. Following High School he traveled with a group of sales people for a year and saw some of the U.S. that no one else in his family has had the opportunity to visit. Then at the age of 19yo he came home and talked about going to college or finding a steady job with benefits. He had no health insurance and was not keeping up with his check ups. He applied for a job at the hospital where I worked and they wanted a note from his cardiologist that he could safely work around the machinery in the clinic with his pacemaker. I had to sign a contract for them to take the money out of my paycheck so that he could be seen in the clinic without insurance.

On December 2, 1997 exactly twenty years and two months from the day he was born and two months since his twentieth birthday, he took me to work so that he could borrow my car to look for a job. It took me ten minutes to wake him up since he had stayed up late the night before and I was a bit aggravated with him since he didn’t seem to be placing much emphasis on getting a job and growing up. As I was getting out of the car to go into work I was about to say “I Love you” but then caught that on the tip of my tongue and said “good luck on finding a job” instead. I was forty years old at the time. I am fifty seven yrs old today. If I live to be fifty eight, sixty or eighty….. there is nothing that I will regret or be more sorry of than holding those words back that morning.

Greg called me at work at 9:30am to tell me that he thought that Phillip must have fallen and hit his head against the cabinet where he found him lying unconscious. While talking to me 17yo Greg became horrified that he realized that Phillip wasn’t breathing. At first my mind could not absorb what Greg was telling me and I asked, “are you sure” before telling him to call 911. A doctor and friend at work arranged for another nursing supervisor to take over for me and he cared for our pediatric psychiatric patients until my replacement came. Another colleague rushed me home a mile from my job and the EMT’s were performing CPR on Phillip on the floor when I came in. I held on to hope for the drive to the hospital and lost some of that hope when the hospital chaplin met us at the door and directed us to the waiting room. Jimmie, my husband met us there. Greg had come with me by courtesy of my friend from work and another friend picked up our daughter Lacey, 13yo, from school. When the E.R. resident came in to say that they had tried but Phillip never regained a heart beat…. I could only stand up and walk in a circle saying over and over….”it is Dec 2nd, 1997 and my life will never be the same.” Truer words have never been spoken by me. My life has never been like it was before Phillip Alan Henry died from sudden cardiac death.

Three weeks later I went to the E.R. with grief induced arrhythmias. I had been to this same E.R. at least three times in the past five years with the same complaints of palpitations and slight shortness of breath and they had always lectured me that “lots of people have pvc’s, you just have to learn to live with them.” But with the history of my son’s recent cardiac death at twenty years old and the increased seriousness of trigeminy and triplets of pvcs they decided to do more testing.

At my follow up appointment the following week with my new cardiologist and Phillip’s old cardiologist, I was told that I had dilated cardiomyopathy and arrhythmias caused by that heart damage. The doctor also explained that he now believed that Phillip probably had dilated cardiomyopathy also but since it was believed that his third degree heart block was “fixed” with his pacemaker they had never done another echo and his primary diagnosis was never realized. If we had known in 1997 what we know today. Chances are that Phillip could have been treated for dcm, received an ICD and lived a long life.

I wasn’t sure that I would be able to live on for the first two years after Phillip died. The only reason that I am still here was because I had two other children who needed me. Someone whispered in my ear at the memorial services that it gets better with time. I knew that her son had died from sudden cardiac death two years before but at the time couldn’t even fathom that “this” would ever get easier.” But now sixteen years later, I admit that time is your best friend in grief. Today I am thankful for every single day and the opportunity to enjoy being a wife, mother to Greg, thirty three years old with five children and Lacey, twenty nine years old with three children. Being a grandma is the absolute joy of my life. You could say that Phillip’s death played a part in saving mine. I have been blessed enough to live when the research had improved care for those of us with dcm and the resultant congestive heart failure and arrhythmias. I have had my ICD for almost 8 years now. I have never had the BIG shock but the pacemaker part has steered me out of ventricular tachycardia numerous times. If given the choice…..I would rather have traded places and given my life for Phillip to have lived a long life but that does not prevent me from counting my blessings every day.