Forever And ADay ForLauraMichelle
A Story of Struggle, Of Life, and Death. and His Promise Kept.
August 8, 20153000 days ago
Stacy and I met late toward the end of high school. Arkadelphia is a rather obscure town in Arkansas whose population of some ten thousand has been unchanged for at least the five decades of my life. It is home to Ouachita Baptist University and Henderson State University, bitter rivals separated by ‘the ravine.’ Henderson is a state school while Ouachita is an expensive private concern.
My mother Jewell Dean, was born and raised in the backwood sticks of Graysonia, Arkansas, a town some twenty or thirty miles from Arkadelphia and straight out into the wooded wilds. Graysonia came to being because of the logging resources and had mostly died out by the early 1950s. The three-room shotgun house she was raised in is one of only three buildings from that era that remain standing today. My father, Earl Smith was born in Enola, Arkansas north of Little Rock, but lived mostly around Arkadelphia down ‘below the railroad tracks.’ Though my mother graduated high school, my father only made it as far as the eighth grade. After they met and married, my mother never wanted to go back to Graysonia. My father started a business laying natural gas pipelines that eventually operated over a dozen crews in three states.
Stacy’s mother, Johnnie, was a country girl from Sherwood, Arkansas, then a small rural town which has since become a large suburb of Little Rock. She met Gilbert Morris, Stacy’s father, at a dance and eventually they married. She worked at the local telephone office. Gilbert went on to eventually get his Ph.D. and was an English professor for many years at Ouachita. He also became an ordained Baptist minister and is today a well-published Christian author. Though Stacy had the privilege of attending Ouachita free of charge, she went only a few semesters, mostly because of me. I was a Chemistry major at Henderson with hopes of being accepted to the University of Arkansas for Medical Sciences College of Medicine in Little Rock.
Stacy married me just before Christmas of 1977. It was February of 1979 and we were waiting on ‘the letter’ hopefully telling me that I had been accepted. All the medical school acceptance or rejection letters went out on Friday the 16th and by Saturday, the following day, everyone else I knew had their letter in hand. Of two dozen fellow medical school applicants from my college, only two had been accepted. I sulked to myself that I was probably the only applicant in the state of Arkansas who’s future, medical or otherwise, was in limbo.
I was on edge to be sure. My rural mailbox was devoid of my letter on Saturday. Because Monday was also President’s Day, no mail was delivered at all. Stacy and I got into a brief argument which culminated in me slapping her as we drove over the cow grate into my parents long driveway. She immediately returned me the same favor and I was suddenly yanked back into the real world. Thankfully, I made up quickly so that it was both the beginning and the end of our spousal abuse period.
Tuesday arrived and I didn’t wait for the rural postal carrier to come to my mailbox. I chased him down. My letter said I was accepted. I was going to be a doctor, something I had been talking about, so they tell me, since I was four years old.
That summer Stacy and I moved to the married floor of the Jeff Davis ‘roach motel’ dormitory. Having just turned twenty-one I was one of the youngest of the hundred and thirty-six medical students entering our class.
While in college at Henderson State University, the three of us who were accepted to medical school had been both good friends and fierce academic competitors. For four years all of our test scores were within a couple of points of each other, and we rotated regularly for the top grade in Chemistry, our college major. I graduated Cum Laude with a 3.73 GPA. What a contrast there was between the silly freshman psychology course, which I despised, and the seriously difficult Chemistry classes I was acing! I made my one and only C in that class.
The year I started medical school at the UAMS College of Medicine was also the year the school decided to put Arkansas’s only medicine program on the United States map. My classmates and I were to become examples of just how tough the school could be. I’ll never forget the Neurosciences examination where there were about a hundred F’s out of hundred thirty-six students.
While UAMS was intent on a national reputation, I changed focus. Where I once had to have an A on every exam I began honing in on seriously learning and understanding everything about medicine. Grades took a back seat to being the best doctor I could.
Still, I was studying harder than ever. We had our own printing press. Pairs of students were assigned to attend and take detailed notes for each class. Just one lecture’s canned notes were often fifteen pages, single-spaced, front and back. One test could cover a dozen lecture’s canned notes. Stacy often heard me regurgitating my canned notes in my sleep.
We were essentially newlyweds in medical school. Our apartment was small with a bedroom, bathroom, and combined living room and kitchen. But we were happy. The building really did have a roach problem and we fought with them continually. Stacy worked hard to make our little space a home though. She worked to support us, was a great homemaker, and a fine cook too.
One Sunday afternoon we came home to an oven roast and vegetables. As she was trying to cut the roast on the edge of the very small kitchen counter, it slipped off the plate and onto the floor. Stacy burst into tears as I picked it up, and sobbing she asked me if we could eat it anyway. Without hesitation, I cleaned it off in the sink, and we ate that delicious roast. Through experiences like these, I began to realize just how much more I loved Stacy than I imagined.
Advancing from the sophomore to junior year, medical students move from pure academics and into primarily clinical training. The third year is a major crossroad. We rotate through all the specialties and by the end of the year have to make a choice of the specialty that will shape every aspect of the rest of our lives.
When I finally did my Pediatrics rotation, it was the end of the junior year. I hated all the surgical specialties, especially obstetrics and gynecology. I didn’t really like adult medicine either, but I loved taking care of kids. It was in just those last few weeks of clinicals that I knew Pediatrics would be the focus of medicine for me.
Since all specialty training programs can accept limited numbers of applicants there is a time-honored method of selection. Senior medical students pick and interview at their preferred training programs. Residency directors pick and rank students in the order of their preferred choice. Senior students pick and rank their favored programs in the same way. Once a year on match day, all these choice lists are fed into a computer and the highest ranking students are paired with the highest ranking program preferences.
Stacy and I travelled and interviewed at residency training programs at in Memphis, Tennessee, Kansas City, Missouri, Wichita, Kansas, Denver, Colorado, and Galveston and Dallas, Texas. It was the University of Oklahoma at Tulsa and the Arkansas Children’s Hospital in Little Rock though that primarily caught my eye.
My entire senior year electives were spent at Arkansas Children’s Hospital though, and that is where my heart was. I enjoyed it immensely and it was only an hour from my home town. As a senior medical student I was assigned patients to care for just like the Pediatric residents. I had the first Pediatric diabetic patient there in Arkansas who I started an insulin pump. Though rare then, insulin pumps are common today.
I placed Arkansas Children’s Hospital first on my match list followed by Oklahoma University at Tulsa. To my initial dejection, I matched with the University of Oklahoma Tulsa Medical College Pediatrics program and not with the Arkansas Children’s Hospital. When I finished my training at Tulsa however, I felt that I had gotten a much better education.
For Laura, that education became her lifeline.
In Tulsa, there were three major hospitals where the Pediatric residents trained. The largest, St. Francis Hospital, is a thousand bed facility known as the pink palace because of its fine, Italian pink marble exterior. My older daughter Andrea was born there during my residency.
St. Francis also is the home of the Eastern Oklahoma Perinatal Center, or as we called it, the EOPC. This Level 3 neonatal intensive care unit had 45 beds and also admitted sick babies referred from Arkansas and even Missouri. Routinely the premies there were only 21 to 24 weeks gestation, and less than two pounds. By today’s standards, such a 45 bed unit would not be uncommon. In 1983 when I started my Pediatrics residency, it was huge.
There were always three, or four, first year residents in the EOPC, each caring for about a dozen little babies. The senior third year resident who was responsible for them was himself directly responsible to the EOPC staff neonatologists. We all rounded together at least twice a day carefully going over each and every patient.
Residents, even though they are in training still, do get paid a little. The entering stipend for me was something over $16,000 a year. The EOPC always needed extra second and third years supervising first year residents at night, and it put a little extra money in our pocket. It wasn’t much but it was the only place we could really moonlight. I supported my wife Stacy and my new daughter Andrea on this income.
The number and range of diagnoses and clinical conditions I saw at the EOPC was unimaginable. The intensity was such that I have had to direct two resuscitation teams simultaneously each trying to save dying babies. The mortality rate for the EOPC as a whole was over 30%, a reflection in large part on the fact that lung surfactant had not yet been developed. Lung surfactant helps keep the air sacs open and inflated easily after just the first breath.
Tulsa Medical College had not only trained me well, but it foisted the mantle of leadership onto my shoulders. It taught me how to bring the various medical professionals together as a team. It gave me confidence in myself as a Pediatrician.
That gave me a love for children which has continued to grow stronger over the years. I invest myself emotionally with my kids. I long for their success and good choices in life. I want the best for them. Tulsa made me the physician that I am today.
Not to say that I haven’t taken care of some extraordinary children, but Laura was the main beneficiary of mine. Everything I had learned in training would be required of me for her. Everything Stacy and I had grown to be as husband and wife and as parents would also be required for her.
Everything I had believed in the Lord for Laura would also be tested.
I finished my Pediatric residency in June of 1986. Stacy and I and our daughter Andrea headed to solo Pediatric practice in El Dorado, Arkansas, a town of about 25,000. Located not many miles from the Louisiana border, it is also a couple of hours from any neonatal referral centers. The handful of Pediatricians there also took care of premature babies even on ventilators, something I was keen to continue doing in private solo Pediatrics.
In my six plus years in El Dorado, I cared for some 69 premature or sick newborns. The smallest baby was just 1 pound 13 ounces and went home after three months and had minimal problems later despite being so early.
It was during this time, that the first artificial lung surfactant called Exosurf was developed. Babies exert tremendous energy taking their first breath because the tiny air sacs have to suddenly inflate and instantly begin to transfer oxygen to the bloodstream. Full term babies normally have a substance called surfactant which reduces the energy required for the closed air sacs to expand. It is the lack of surfactant in premature babies that has historically been the primary cause of their death.
Because our little hospital and small group of Pediatricians was taking care of so many premies, we were accepted to part of the final clinical stages of study before the drug was approved for general use. As far as I know we were one of only a couple of places in Arkansas using Exosurf. And we were seeing amazing results such as the small baby I mentioned above.
I was working often twelve to sixteen hours a day. Sometimes I was up most of the night in the nursery and after seeing a full office load that day, then working a full load the next day. My professional confidence grew. I was tired but excited about practice and about life. Little Andrea was growing. Stacy and I were still in love more than ever after ten years of marriage.
As most people find out, life’s road has deep and sometimes frame-rattling potholes. Stacy and I ran over one in 1987 when she found out she was pregnant with Laura. It wasn’t because of the pregnancy itself of course that I call this a pothole. We loved children and we loved Laura always.
Stacy who had complexion problems since early adolescence, had been on a new medication called isotretinoin, known more commonly as Accutane. It really helped her. We thought we were being careful and had been using not one, but two forms of contraception. It was thought then that some 25% of unborn children exposed to that drug would experience a range of significant birth defects.
Despite being careful, Stacy became pregnant with Laura. She was only on Accutane for about the first 16 days of pregnancy and stopped it immediately when she knew she was carrying Laura.
I had read all the potential side effects of the drug. I read and reread everything that I could find. At that time there just wasn’t much experience with children affected at birth by Accutane. Even more disconcerting was that some children exposed for much longer than Laura, appeared to have no defects, even after their mother continued to take the medication knowing they were pregnant.
I was terribly upset. I simply knew too much. I had seen too much at the EOPC even in my short career. Afraid and sensing that my unborn child would not only be affected, but suffer terribly, I began to consider the unthinkable. Stacy was the one with the courage. My vast knowledge did nothing but bring me fear.
Bolstered by her courage we had to begin trusting in our Father. I had to let go of my fear of the unknown. After all, I told myself as time went on, the ultrasounds at the time seemed to show no problems. She might just be fine. Besides, I thought again, Stacy was only on the medication for some 16 days.
Stacy’s water broke a little early. One thing led to another and she delivered Laura by C-section. Our worst fears were quickly apparent in Laura’s smaller, misshapen ears and her little crooked grimace when she cried. Her elbows were a little tight and she didn’t close her left eye fully. She was a bit tinier than Andrea when she was born.
I was devastated. Stacy was too, but her unfailing first priority was to love Laura. I have forever emblazoned in my mind the picture of her lying in bed tenderly holding Laura in the crook of her neck. On her face shines a satisfaction that says “mother’s here and I’m so glad to see you! I love you so much!”
My heart was broken. I already knew inside, and painfully so, what Laura might face. I didn’t really know though that our watchful Father had already heard our tearful prayers even long before she was born.
In Laura’s first year, it became obvious that there were serious medical problems. She had a significant brain malformation that was similar to Dandy-Walker syndrome. Possible hydrocephalus required a shunt tube to be placed to drain the fluid from the center of her brain to her abdomen. She was just a year old when Dr. Redding, the neurosurgeon did this in Little Rock.
Her left ear was small and the internal ear structures were not formed correctly. Her left face muscles were paralyzed because of damage to the facial nerve which also passes through the ear in its path from the brain. Because her left eye didn’t blink, she immediately developed chronic corneal abrasions.
She never rolled from back to front. It wasn’t till she was about three that we first heard her laugh. The ear specialist she saw described poor hearing and the eye specialist found optic nerve damage. Though we never knew for sure what she could hear or see, we did know that as she got a little older she did have a cute little giggle when I played with her like daddies do. The rougher I played with her the more she seemed to giggle.
She was never developmentally more that 3 to 6 months old. She never sat or rolled over. She never had use of her hands. She never spoke any words.
I got the phone call from Dr. Lammer sometime before Laura was a year old. He was one of the few specialists studying what is now called fetal isotretinoin embryopathy, a diagnostic term I have hated since first hearing it. He asked if he could come and see Laura when he was in the area, though he didn’t know when that might be exactly.
Five years later, I got another call from Dr. Lammer. He was finally in the area and asked if he could come by and see Laura. He spent the entire day with Stacy and Laura and me in my office. His coming is just one of a string of God’s flags along our road that says “I’m still here and I’m still watching and I still care.”
We learned that there were only a handful of other children who were as severely affected as our Laura. None of them could laugh, let alone respond to painful stimuli such as a needle stick. Laura surprised him when Dr. Lammer drew blood samples and she winced in pain. It was heartbreaking to learn that had Stacy stopped taking the Accutane just four days earlier, very likely Laura might not have been affected at all.
Dr. Lammer also told us how Laura was more severely affected in comparison to the other four to five hundred children in his patient panel. It meant that we were probably in uncharted medical territory. This meant that as her de facto Pediatrician, I would know more about the condition than the vast majority of even Pediatric specialists anywhere. Daddies are just not meant to shoulder the burden of the medical care for their children. I have always had to.
Still one thing was curious but also encouraging. Dr. Lammer’s surprise about Laura’s perception of pain and joy was significant to us. We felt the warmth of God’s heart and blessing toward us. Roadside flags like that came often enough in the future to give us strength and encouragement. We never heard from Dr. Lammer after that but we kept believing that our Father was walking with us.
Finally after some six and a half years of very long days and nights taking care of premies, Stacy and I moved to Decatur, Texas. We wanted a slower lifestyle for our family even if it meant significantly less income. Andrea had not long been in first grade. She was growing and doing well.
The school system in Arkansas required Laura to attend public school despite being so very medically fragile. Even being a Pediatrician and having the most medical knowledge about Laura’s condition meant nothing to the state. It was made perfectly clear to me and Stacy that no matter how frail she was, she would attend school or they would put me in jail. Moving to Texas meant we could get out from under that dangerous Arkansas nanny state idiocy.
I had been caring for another very chronically ill child who was about Laura’s age. He had been very premature and on a ventilator for most of the first year of his life before he came to my practice. His lungs had sustained permanent damage though the ventilator had saved his life. He too was forced to attend public school. I learned several years after we moved that he had died. I wondered if Laura would have too, had she been forced to attend public school.
After encouragement by Kelly, a good friend from church who was an occupational therapist at the local Texas elementary school, we decided to give the public school there a chance. Laura’s years there were some of the best ever. Kelly even had Laura doing swim and horse therapy. It was a sight watching the therapists on either side of a fifteen hundred pound horse holding Laura up. She wasn’t even twenty pounds.
At school Kelly got her into a four point wheeled walker which supported her head and neck and suspended her so that her toes could just touch the floor. I watched as she struggled and pushed ever so slightly with her toes. She couldn’t really do much purposefully with her legs. All the same, the other children and teachers loved Laura and would clap for her and urge her on as she ‘walked’ into their classroom.
After five years in Texas, my medical practice brought me to Fayetteville, Georgia. Laura was always a tiny little thing, still not even twenty pounds by now, and her growth rate was so slow. I think it was probably one of the effects of the drug exposure, but there was no one to ask. No one else knew even nearly as much as Stacy and I already did about her condition.
Despite having little purposeful use of her arms and legs, she did have strong muscular posturing, especially when she was eating. She started to have more problems with feeding. By now she had so much strength in extension that it was all Stacy could do to hold her, much less feed her, so I started feeding her all of her meals.
Besides breakfast and supper, I would come home at lunch every day between the morning and afternoon clinic patient loads to feed her. She would spit and choke and extend so forcibly that our walls had baby food stains. Stacy and I knew that she probably soon would not be able to eat by mouth any more. I contacted Dr. Bleacher a friend and colleague of mine at Scottish Rite who is a Pediatric surgeon. He agreed that it was time to place a feeding button in her stomach.
It was to be a simple procedure, but for Laura it was to be a three day hospital stay. He would place the abdominal button in surgery, then they would begin tube feedings to make sure everything was going well. She would go home never to eat by mouth again. She went into surgery on a Thursday, May 10 of 2001.
On Sunday, Mother’s Day, Stacy had begun the long drive home to get us more clothes not realizing that Dr. Bleacher had just ordered a stat abdominal x-ray. The films revealed that Laura’s very strong extensions had pulled the internal bulb of the feeding button out of the stomach wall. Her tube feedings were instead going into her abdomen causing a life-threatening peritonitis.
They took Laura from my arm’s and back to surgery then and there. I didn’t know if that was the last time I would see Laura. Thankfully, she made it through the surgery.
She spent the next thirty days in the PICU. Her abdomen was infected with bacteria and fungus. Three surgeries later, the infection was gone, the ventricular shunt drain relocated to her heart, and a new abdominal feeding button was in place.
Because I was a Pediatrician and Stacy a nurse, they actually discharged her directly from the PICU to Laura’s special van for the drive home.
Shunts are often revised even as often as one or more times a year. When Dr. Reisner had to relocate the drainage end of her ventricular shunt due to the infection in her abdomen, he asked us how many shunt revisions Laura had had. He was amazed, if not shocked, when we told her she had never had a revision. Her ventricular shunt was the same one that Dr. Redding had placed in 1988 when she was just a year old.
Clearly it was working. He saw Laura some two years later and continued to be surprised that her brain scans again showed her shunt was functioning normally.
It was about then, however, that Laura developed seizures. It took three hours before we could get the first one stopped. Over the next nine years she had a handful of prolonged seizures lasting right at two hours. All the seizures were controlled by medication for the most part, but the long ones were difficult to stop.
In January of 2012, I was at work and Stacy was leaving Laura with her nurse. She went outside to get into her car, returned when she realized she had forgotten something. She walked in on the nurse slapping Laura sharply and repeatedly on the left side of her face, the same side as her ventricular shunt. The police were called and she was arrested.
Except for notable bruises on her face, there were no obvious injuries. She seemed to do OK until early April. Stacy noticed that she felt cold. When she measured it, her temperature was quite low. We had seen this once before with elevated phenobarbital seizure medications. Once again it was indeed elevated and proper adjustments were made.
This time her temperature didn’t bounce back to normal like it had before. She started having very brief, infrequent seizures lasting only 1 or 2 minutes and stopping spontaneously. She had no vomiting or other symptoms to suggest a shunt malfunction. Now twenty-four years old with the same shunt they had placed in her brain when she was a baby, we didn’t really think it was malfunctioning.
Still the mini-seizures and the very low body temperature bothered me. I ordered an MRI which she got the next day. On the way home the Pediatric radiologist called me directly on my cell phone to tell me that the shunt had a severe malfunction and the normally slit-like ventricles were extremely dilated. No sooner had we arrived home and got Laura situated in bed when Dr. Reisner called. He requested us to immediately come to the Scottish Rite hospital ER in Atlanta.
Her body temperature was now below 94°. She was still not vomiting or exhibiting any other signs of shunt malfunction. He took her to surgery for an emergency shunt revision. The next morning, her temperature was up, and the new shunt in place. Clear spinal fluid draining into an external container, a very good sign. Dr. Reisner thought we were out of the woods.
The next morning something woke me. We had been sleeping in the parents sleep room next to the PICU. I arrived in front of her windowed PICU cubicle to find the Pediatric intensivist and half a dozen nurses and respiratory therapists working feverishly over her. Her blood pressure had fallen precipitously and the clear spinal fluid was now bloody instead.
Two days later on April 24, 2012, after a stat CT scan of her head, it was certain. Laura has suffered a major brain bleed. Dr. Reisner confirmed that she was unable to breath on her own, and his neurologic tests confirmed that she was indeed gone.
With Stacy and me, her sister Andrea, and our close family all around Laura’s bed, our pastor led us in prayer. Sobbing and brokenhearted we watched then as they withdrew the ventilator releasing Laura fully back to our Father.
For twenty-four years we had walked with Laura through this life. Now we had walked her to the very doorway connecting this world to the next. On our journey we had loved her and cared for her. As parents we had cared for her like no one else could. The physician in me knew the possible endings from the moment that we found out Stacy was carrying Laura. The mother in Stacy would nurture and laugh and cry over her. She savored her child and Laura knew it, I’m sure.
Over the years, Stacy and I shed many, many tears and cried out many times for God to heal our little girl. We had stood. We had believed. We still believed even when she went into the hospital this time so sick. Where was God when we needed him to speak into our hearts? Now that she was gone from us, would we ever know if He had been listening?
Stacy and I had already purchased three adjacent crypts about a year earlier when we first had trouble with Laura’s temperature. When she passed on, most of the major details were already done as a result.
As we were gathering pictures and items to display for her viewing at the funeral home, I found a poem that I’d written for Laura when she was only four years old. Stacy wanted it displayed with our few cherished pictures of Laura.
The funeral home secretary was reviewing the program for the viewing with Stacy. We were astonished at what Stacy found as she proofed the poem.
This poem, all by itself, told Laura’s life story with us. It was the story of our heartache. It was the story of how we overcame our circumstances. It is the story that tells us where we are today.
The last line rings encouragement out loud in our hearts to trust and believe our Father, no matter what. But it was the date just beneath that line that stood as proof to us that our Father was trustworthy. You see our Father called Laura home exactly twenty years to the day that I penned her poem.
Only at that very moment, reading the date at the bottom of the poem, did we see that He had sealed His love for Laura and for us with the irrefutable stamp of time. Our Father had no doubt felt all our sorrows and captured all our tears. And now our Laura was complete and whole and with Him.
He never forgot us during all those years. He was there all the time.
Forever and A Day
For Laura Michelle
By Ron Smith, MD
April 24, 1992.
…now being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.—Philippians 1:6
I started praying for a little child the other day.
‘Cause I was sure that was God’s way
To heal that little one and make her whole.
I was sure of this royal goal.
Her little body was twisted and turned.
Oh, how in my heart the desire burned,
For her wholeness all at once to see,
And then to be all that she could be.
As I prayed, the Holy One spoke quietly
To my inner man on bended knee.
How long will you wait, how long will you believe
For this miracle that in your heart I’ve conceived?
I thought only momentarily, and said,
God, I’m your servant, I wait in your stead
If it be a day, a month, a year or three,
I’ll wait, I’ll wait, I’ll wait, this miracle to see!
Days, months, years passed by,
And it seemed the Lord waited, I don’t know why,
To heal my little girl, such a precious sight,
So small and frail, sometimes I would just cry.
But His words to me would echo,
And in my spirit man, I knew it would be so.
How long will I wait, how long will I believe,
For this miracle that in my heart you’ve conceived?
Forever And A Day,
That’s the only way
To stand in faith, for this my child.
Though it seems her healing hides,
it will only be a little while.