As told by Matthew's mom....

Matthew's story begins on a sunny day in the spring of 2008.  Matthew was a full-term, seemingly healthy baby and we went home with no idea of the journey on which we would soon embark.  However, at 6 months of age, Matthew was diagnosed with global developmental delays and we started out on a search for answers.  Over the course of the next 18 months, Matthew was seen by multiple specialists.  What seemed like countless vials of blood were taken as they tested for this disorder or that disorder...most with names I couldn't pronounce and all ones that terrified me.  I learned about low muscle tone and failure to thrive.  We were told maybe it was Fragile X, maybe muscular dystrophy, maybe a metabolic disorder.  All of this tests came back normal.  I searched the internet constantly, googling symptoms and reading message boards but nothing sounding like my sone.  It was heartbreaking, terrifying, frustrating, and exhausting.

Then, as Matthew approached his second birthday, a night playing Bunco would end up changing the course of Matthew's medical treatment.  That night I was talking to a neighbor and she asked my how Matthew was doing because she knew of his struggles.  While I was talking to her, it occurred to me that I should give her husband a call.  Her husband is Dr. Dominic Gault, Medical Director of Pediatric Sleep Medicine at the Greenville Health System's Children's Hospital.  Matthew had had some balance and hearing issues early on that had been remedied by a simple set of ear tubes.   I had for some time felt that he had other ENT-related issues and I wanted to take him to a pediatric ENT and I thought that Dr. Gault could give me a recommendation.  I told her as much and she kindly told me that she was sure he wouldn’t mind at all.  She evidently told her husband about our conversation, because a couple of days later, Dr. Gault actually called me to see what was going on with Matthew.

Matthew was always a noisy breather.  He often sounded congested and he sounded like an old man while he slept.  In fact, every doctor who had seen him had commented on his congestion and I myself had told every doctor, jokingly really, that he snored like an old man.  What I failed to recognize, and what other perfectly competent physicians failed to recognize, was that that snoring was significant.  Dr. Gault, in a 20 minute telephone conversation, would end up changing Matthew’s life.  As I was describing Matthew’s congestion and explaining why I wanted to see a pediatric ENT, he asked me if he snored.  Why, yes, he snores!  That night, I recorded him sleeping and emailed it to Dr. Gault.  Whatever he heard was enough for him to want to see Matthew in his office and we soon scheduled a sleep study.  The results of that first sleep study were nothing short of shocking to my husband and me.  We had slept by his crib in the pediatric sleep lab that night and left there feeling like perhaps it had been a waste of time.   His snoring wasn’t as bad as it sometimes was and considering he was hooked up to dozens of electrodes and wires, he seemed like he had a pretty good night’s sleep.  The data, however, showed otherwise.  Our sweet boy was diagnosed with severe obstructive sleep apnea. 
Obstructive sleep apnea occurs when the airway collapses and disrupts the normal amount of air from moving in and out of the body during sleep.  This results in drops in oxygen (the good gas that we breathe in) and increases in carbon dioxide (the bad gas that we breathe out).  The body has to awaken repetitively throughout the night in order to reopen the airway.  These issues place stress on the body and result in worsening health and daytime performance.
Matthew’s sleep apnea was caused by his large tonsils and adenoids.  His low muscle tone was also a contributing factor.  He would wake himself up in order to breathe.  The study showed this was happening an average of 34 times per HOUR.  Because of the remarkable sleep disruption, his body was not secreting the growth hormones that his little body so desperately needed.  Our sweet boy was simply exhausted.  He hadn’t had a good night’s sleep in his entire life. 
Matthew was immediately scheduled for surgery in April of 2010 to remove his tonsils and adenoids, which is the first line of treatment in cases such as his.  His surgery went well and after a week of recovery, he quite literally woke up a different child.  Matthew, at 2 years and 1 month of age, took his first independent steps and he suddenly was more interested in the world around him.  Dr. Gault told me to expect a “growth spurt” and Matthew did not disappoint.  He was wearing 18-month clothes before his surgery and that winter his wardrobe consisted of all 3T’s.
While Matthew’s surgery was definitely considered a success, it did not totally “cure” his sleep apnea.  A follow-up study showed that he still had some degree of sleep apnea and Dr. Gault ended up prescribing Continuous Positive Airway Pressure, more commonly known as CPAP, therapy.  Matthew would need to sleep with a mask attached to a long hose that would blow air into his airway and effectively keep it open.  I recall being in Dr. Gault’s office as he explained the equipment and fit Matthew for his CPAP mask.  I, of course, was somewhat disappointed that he would need it but I was willing to do whatever I needed to help him.  When you are presented with a graph that shows the number of times your child can’t breathe, you will do whatever it takes to stop that from happening.  I left there feeling confident that we could do it!   What I didn’t realize at the time, however, was how challenging and frustrating the transition would be. 
In a perfect world, Matthew would have immediately started sleeping through the night with his CPAP.  Unfortunately, the world’s not perfect and Matthew was terrified of it.  At first, he was just fine as long as it was off but he would start screaming as soon as we turned it on.  The air blows out at a surprisingly strong pressure, even at the minimum setting, and it’s a rather unnatural feeling to have air blow up your nose.  It was a struggle to get him used to it.  There were a lot of tears shed (by him and me).  It would have been easy to give up and there were times I was tempted.  But, Matthew had a condition that was treatable and my determination to help my child won out.  It was really a family effort.  Matthew had been sleeping through the night (or at least he appeared to be) and we had to take a gigantic step backwards in order to accomplish our ultimate goal.  It was a disruption in a well-established routine that affected the entire family.  But, the improvements we began to see fueled our effort.  We had seen dramatic improvements after his surgery and we started to see more after he got used to sleeping with the CPAP.  He was even more alert, he required less daytime sleep, and his vocabulary began to expand.  We were so thrilled with his progress, that it didn’t matter that our sleeping arrangements were less than ideal.   (For a while, Matthew slept with me while my husband slept on a cot on the floor)  Matthew is finally fully acclimated to his “nose hose” and he sleeps on his own, in his crib, and we are happily all back in our appropriate beds.
Obstructive sleep apnea is more common in children than I ever realized.  Perhaps we would have eventually ended up at Dr. Gault’s office without that neighborhood game of Bunco, but who knows how long that would have taken and I’m incredibly grateful that we are where we are now.  Considering the possible consequences of undiagnosed sleep apnea, I credit Dr. Gault with saving my child’s life.  Matthew has made incredible strides in the past year.  He is still behind his peers, but he continues to make steady progress and we are hopeful for his future. 



 Matthew with Dr. Dominic Gault of the GHS Children's Hospital Center for Pediatric Sleep Medicine.