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Matthew has Severe Obstructive Sleep Apnea

Article posted on Monday, September, 27th, 2010 at 8:00 am

Meet our friend, Matthew.

What continues to amaze me, no matter how many times I hear it, is the power of a Mother’s intuition. There truly is no medical practice in the world that can compete with what God instills naturally in the DNA of a devoted mother.  My friend, Abby Zaffuto, is no exception.

A mother to three children, it is her youngest, a son, that sent her on a path for answers.  No one knows what is truly hiding behind the smile of a Mother. Relief, exhaustion, fear, anticipation…..for Abby, it’s determination.  A Determination to find a diagnosis and treatment for her sweet little boy.

Abby is an amazing and courageous Mom!  Her determination saved her son, and gave him something every mother dreams of for her child…Health, Happiness, and the promise of a better tomorrow.  It really is… the stuff dreams are made of.

This is Matthew’s story, told in his Mother’s own words.

Matthew 11 months old

My third child was born on a sunny March day in 2008. We were expecting a big bundle since his sisters were rather chunky and were a little surprised when he weighed in at 6lbs 15oz.  His delivery was not complicated by any means and we were thrilled to meet our new baby boy.

He was just perfect. His Apgar scores were good, he passed all his newborn screenings, and he even took to breastfeeding immediately. We left the hospital having no idea of the journey on which we would soon embark.

This is the story of our little boy with global developmental delays and our search for answers.

I suspected that there was something wrong with Matthew when he was just three months old. Perhaps I was just overly worried; perhaps it was mother’s intuition. Matthew was late to smile, something I mentioned to our pediatrician at his 3-month well check.

Our doctor wasn’t overly concerned and when he started to smile several weeks later, I felt a sense of relief.

However, as the weeks went on, I again began to worry.  He didn’t seem as alert as his sisters had been, he showed little interest in toys, and he seemed a little “floppy” and lacked head control.  At six months, I again mentioned my concerns to our pediatrician who this time referred me to BabyNet. (BabyNet is South Carolina’s IDEA Part C inter agency early intervention program for infants and toddlers under three years of age with developmental delays or conditions associated with developmental delays.)

Matthew had an assessment done at our home and was indeed found to have global developmental delays.  This did not come as a surprise to my husband and I, but it was still crushing news.  I’m not often impressed with government-run agencies, but we were pleased with the process and happy that Matthew was soon able to start therapy.

Almost immediately, Matthew began a grueling round of occupational, physical, and speech therapies that still continue today.  As thankful as we were (and still are) for his entire Early Intervention team, there was still a huge piece of the puzzle that was missing.  The WHY?  Why was this happening?  What did it mean?  What exactly was wrong?

Matthew and Mom

Over the next two years, we would attend a string of seemingly endless doctors’ appointments.  We saw
a developmental pediatrician, a neurologist, a geneticist, and gastroenterologist, and an ENT.  Matthew was tested for numerous genetic conditions.  At one point, we were told that he could have muscular dystrophy and we anxiously awaited the test results for that.

Thankfully, that test was negative (as were all his tests) and I then decided that we could deal with anything as long as it wasn’t a fatal condition. It’s funny how life experiences change your perspective on things. I had been terrified of autism but all of the sudden it seemed not so bad.

All of our doctors were basically scratching their heads. An MRI showed a normal brain structure, a microarray DNA analysis showed a normal baby boy, numerous blood tests—all normal.  When he fell off the growth chart and was classified as “failure to thrive”, we saw the GI doctor who ran his own tests.  All normal.

So, what was wrong with my baby?  As we had approached his first birthday, Matthew had continued to fall behind on his developmental milestones. He could not yet crawl and was not able to get into a sitting position on his own. If he was sitting, he would often just topple over. His MRI was ordered just after his birthday and, though his brain was normal, our neurologist did notice that he had an unusual amount of fluid in his ears. Enough that she felt it would affect his hearing.

She asked if he’d had frequent ear infections?  No. In fact, he had just one.  We were referred to an audiologist and an ENT and were shocked when we learned that he basically couldn’t hear.

He had tubes placed in May of 2009 and we were thrilled when we started to see developmental progress almost immediately. Within a week, he was crawling and sitting up.  He was no longer toppling over. Could this have been it?  Was he just dizzy this whole time?

The months went on and I continued to monitor his progress. Every little thing he did was met with applause by my husband and me. Even his sisters would come running with excitement when he did something new. I once watched him struggle to reach a book on the floor and then he proceeded to rip it to shreds. He worked so hard to get to it that I didn’t even care.

However, by the next winter it seemed that his progress had once again stalled.  As hopeful as I had been, I couldn’t ignore the fact that he was still really behind.  He would soon be 2 and he still wasn’t walking. I was increasingly frustrated that no one could find anything wrong and I soon began to wonder if his problems were somehow related to the fluid in his ears.  Maybe he just wasn’t “wired” right up there.

We had seen such huge developmental gains after the tubes were placed.  And no one had ever been able to give me a reason for the fluid being there in the first place.  I had voiced my concerns to Matthew’s ENT but he really didn’t seem interested. I knew that he had never taken a comprehensive look at his medical history although I had come armed to every appointment with a binder full of records and reports. I had been told in August of 2009 that he had rather large tonsils and when I voiced my concerns about this to both the ENT and my pediatrician, it was dismissed.

I began to consider taking Matthew to a pediatric ENT. Unfortunately, Greenville does not have one, though I understand that they are actively searching for one. I knew I would have to travel but I was feeling desperate and was willing to go to any lengths. I considered going to Chicago to meet up with a friend of a friend who happens to be a pediatric ENT at the Children’s Hospital there.  Before I did that though, I decided to contact a neighbor of ours who happens to be the Medical Director of Pediatric Sleep Medicine at the GHS Children’s Hospital. Perhaps he could direct me to someone a little closer?

My conversation with Dr. Dominic Gault turned out to be the answer to my prayers.

Matthew in Sleep Lab

I told Dr. Gault about my concerns and brought him up to date on what had been going on with Matthew. I explained to him that I wanted to see a pediatric ENT and why. During the course of our conversation, he asked me if Matthew snored. Snored??  YES, he snores. I had been complaining since day one that he snored like an old man.

He had what I would describe as chronic congestion and in fact, he had been on both reflux medicine and allergy medicine to try to solve this but nothing ever worked. I ended up recording Matthew breathing that night and emailed it to Dr. Gault, who then suspected that he could have sleep apnea.

We soon visited the pediatric sleep lab where Matthew was hooked up to various wires and electrodes and monitored overnight.

The results were shocking. I am pretty sure that even Dr. Gault was surprised at the severity of it.

He was diagnosed with severe obstructive sleep apnea.  What does that mean?  Basically, Matthew hadn’t had a good night’s sleep in his whole life. Why? He had abnormally large tonsils and adenoids that obstructed his airway while he was sleeping.  He would then wake himself up in order to breathe.  Because of the remarkable sleep disruption, his body was not secreting the growth hormones that he needed in order to, well, grow.

Matthew gets his Tonsils Out

Within weeks, we scheduled Matthew for surgery and he had his tonsils and adenoids removed on
April 27, 2010.  By the end of May, he was walking.  And he finally called me “mom.” We began to see cognitive improvements, too. Little things that let me know that he understands the world around him.

Like when the front door is locked, he knows to turn the deadbolt to open it (thankfully, he’s not quite strong enough to do so).  This September, he started preschool and his vocabulary has expanded rapidly.

For the first time, I am able to breathe a sigh of relief.  Could his tonsils and adenoids really cause all of these problems?  We don’t know for sure.  He could have a congenital condition that caused his low muscle tone and contributed to the sleep apnea.  But, I will say, looking back, that we should have been referred to Dr. Gault months before I contact him (on my own). There were obvious signs and symptoms that were missed.

Matthew September 2010

Do I blame his doctors?  No, not really.  Is it frustrating?  Absolutely. I feel as though we missed valuable developmental time, but I am confident that Matthew will catch up.

I have learned many things over the last couple of years.  I have learned that doctors are human. I have learned to believe in the power of prayer.  I have learned to trust my gut instinct.  I have learned to never underestimate the value of a good night’s sleep.  And, like Neely’s mom, I have learned that you must be an advocate for your child.

I would also like to take this opportunity to thank Dr. Dominic Gault and his team at the Children’s Hospital.  Though I know he won’t accept the credit, I give him credit for saving my child’s life and I will be eternally grateful.

He took the time to listen to me and he was able to complete the puzzle.

Undiagnosed sleep apnea can lead to serious health conditions such as a stroke or cardiac conditions and, as I have learned, symptoms of sleep apnea are often missed.

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