Monday, November 9, 2009

His Name Was Shaun

Born three weeks before his due date but perfectly healthy...or so we thought.  Eleven weeks and six days later, he was gone.

I found out I was pregnant right after I began a training course.  It wasn't a planned pregnancy and my husband was only working part-time.  Our oldest child, Bubba, was just five months old when I became pregnant with Shaun.  Bubba was born five weeks premature and spent his first two weeks in the NICU at Hershey Medical Center.  At five months, he was thriving, but my husband and I weren't making ends meet financially.  So I signed up for a training course to get a job that paid well.  It was not a good time to be having another baby.

I made it through the training course with flying colors and was offered a job at the business where I interned.  I finished my internship on a Friday and Shaun was born two days later.  I started working right after the New Year when Shaun was almost two months old.

The last week of January 1987, Shaun developed a mild cold.  The cold seemed to run a normal course.  My husband was home taking care of our boys during the day while I worked.  On Friday January 30, my husband went to wake Shaun for a feeding, and Shaun was not breathing.  My husband called 911 and began CPR.  Shaun began to breath, but he immediately began having seizures.  As the ambulance was about to leave to transport Shaun to the hospital, my husband called me at work to tell me what happened.  I told him I would meet them at the hospital.  The fire crew that accompanied the ambulance took Bubba to the fire station to watch him for us until someone could pick him up.

When the ambulance arrived at the hospital, the crew was still working on Shaun because he wasn't stable.  The doctors gave him medication to stop the seizures but it did not work; he continued to have seizures.  Our pediatrician arrived and noted some symptoms that made him suspect the cause of the illness.  Plans were made to stabilize Shaun and then to transfer him to Johns Hopkins Hospital the next morning.  Our local hospital was too small and not equipped to handle his needs.  I stood beside Shaun and talked to him and held his tiny hand as I tried to comfort him.  Shaun finally began to stabilize so then my husband and I left to pick up Bubba and send him with my parents to their home which was an hour away.

My husband and I returned to the hospital.  Shaun had been admitted to the ICU.  I told the nurses that I planned to stay in the waiting room overnight.  They encouraged me to go home and rest because we needed to be ready for the transfer to the other hospital the next morning.  I decided that what they were telling me sounded logical and made sense; so I left with my husband and went home.  To this day, it is one of the biggest regrets of my life.

Just after 5:00 a.m. on January 31, 1987, the phone rang.  A doctor called to tell me that my son "didn't make it."  She was crying, and I was crying as I hung up the phone.  My husband and I dressed and went back to the hospital.  We called our families to tell them about Shaun's passing.  I asked my parents to bring Bubba home.  We also called our pastor and asked him to meet us at the hospital.  When we arrived, Shaun was lying swaddled in a blanket with medical tubes still in place.  The nurse explained that the tubes had to remain attached because our son was a coroner's case.  In most states when a patient dies within 24 hours of arriving at a hospital, he or she automatically becomes a coroner's case.  They did allow us to hold Shaun.  We asked our pastor to baptize him even though baptism is only for the living.  Our pastor was very compassionate and understood the value of comfort that came from performing the baptism on a deceased child.

We left the hospital and went home.  My parents arrived soon after with Bubba.  Bubba became my source of strength and my entire focus over the ensuing days.  There were times when I lay face down on the floor consumed by grief.  I tried not to do that in front of Bubba though.  I cried mostly when I was alone; mostly in the car.  I numbly made it through Shaun's services.  Every day for at least a year after Shaun's death, I walked to the edge of insanity.  My job kept me busy and my family supported me and kept me from going over the edge, but it was Bubba who gave my life purpose and a reason to live.

The autopsy confirmed what our pediatrician had suspected.  Shaun had a disease called Maple Syrup Urine Disease (MSUD).  It is a metabolic disease and has many variants.  In Shaun's case, the disease had been dormant--waiting for a trigger.  His mild cold had activated the disease and then it ravaged his small body quickly.  One of the ways I worked through my grief was to learn as much as I could about MSUD.  I became an advocate to add it to the list of diseases that each child was tested for at birth.  A few years later, I went to college to study biology and chose MSUD as my senior research project.  My husband and I went through genetic counseling to determine if we should have more children.  We were advised that our risk was low.  I had three more healthy children--all girls.  Each was tested for the disease.  Currently, 21 states require testing for MSUD at birth.

For several years, I struggled with good days and bad days.  In 23 years, there have been only a small handful of days where I didn't think about Shaun.  Every year at this time, I struggle just a little as his birth and death dates pass.  Even now, if I let my thoughts dwell on him, I cry easily.  Most days, I just put my hand over my heart and the emotional scar which was left by his short life, is almost palpable.  I shared my story to honor Shaun on his birthday.  I also hope that there may be someone reading this that lost a child and can look at my experience and know that they can survive the loss and eventually find joy and grace.  Those who know me personally say that I am a joyful person.  Grace is another matter, but joy is abundant in my life.

Happy Birthday Shaun.  I love you and you will always be in my heart.

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