Alex, Conor, and the Monitor

by Jennifer Miltenburg

Date: Fri, 23 Jun 2000

After reading many of the stories on this site, I realize my story is not an unusual one. It does , however, have an unusual twist.

The story begins 14 years ago. At this time , I don't want to relive the details of the fateful day, just the outcome. My son Alex was born June 2, 1996 a full term healthy baby with an Apgar score of 9. He died 14 full days and 9 hrs later ( in his 15th day, but he died between 5-6am) of SIDS.

Fast forward 5 years. Our second son Patrick, now 4 years old, was on the home monitoring system until 6 months of age. There were the occasional alarms when the leads slipped or fell off, but no other alarms. For those of you unfamiliar with monitoring systems, the machine makes not only makes a different noise for a respiratory or heart failure, also different lights come on and stay on. At any rate, Patrick was a healthy happy infant who most important of all , survived his infancy!

So when our 3rd son Conor was born and routinely assigned a home monitor ( the practice in our area back then), we were very comfortable with not only the machine, but considered it more of an aid for our peace of mind, than for his health . Were we wrong...

January 10, 1992. Conor is 14 days, 7 1/2 hours old. He is an unusually deep sleeper at this age, beginning to sleep long stretches of almost 8 hrs at night. The monitor goes off - for respiratory arrest! As per proper procedure, I study the baby while the alarm wails. No breathing - yes it is a true alarm. I gently, then a little bit harder, shake Conor.
He takes a breath, the alarm stops ( but the lights stay on til you reset them). I read the monitor. It say low respiration. I reset the alarm, leave the room to talk to my husband, 10 minutes later the alarm sounds - low respiration! I follow the steps, then wake the baby. He is fine.

We call both the doctor and the respiratory therapist. The doctor says, bring him in if you have more troubles. The respiratory therapists suggest resetting the normal parameters of the machine to allow for a lower respiration rate before alarming - perhaps Conor just breathes really slowly when he is deeply asleep. Consider it done.

The rest of the day passed with no problems. But that night, as Conor was in his 5th hour of his deep sleep period - the alarm goes off. No repiration, even at the slower rate. Conor's colour is changing. I shake him gently , he takes a breath. This repeats itself twice more before morning.

In hindsight I don't know why we didn't run screaming to the hospital.
The reasons we gave were we were 1/2 hour from a hospital ( we live on a farm) on a weekend, there was a snow storm closing the highways, we had another small child asleep and no available child care. But the real reason was I think we were in shock. We were kind of like " oh well if all we have to do is shake him, at least he's alive". Looking back I can hardly believe it, but it's true.

Anway by the time we finally called the family doctor when his office opened later in the day, he told us to take Conor immediately to the hospital. To make a long 12 days short, Conor was transferred from our small local hospital( 2 days later, after the snowstorm ended) to The Childrens Hospital in London Ontario. There the doctors called him "The MultiMiltenburg Baby" because of the dozens and dozens of tests conducted on him. Blood work, metabolic and pathogen screens, genetic testing, 24 hour monitoring of respiration, blood presure, heart etc, full body xrays, crainal xrays, CAT scans, barium xrays, and a few really nasty ones where they wouldn't let me watch but I could hear him screaming from the hallway.

The results? None. After 8 days his apnea just stopped, never to return.
Nothing in all the tests was anything but normal.

Today Conor is 8 years old and in second grade with an aide. He is still an extremely deep sleeper. He has a moderate learning disability, a mild receptive language disorder and a severe expressive language disorder. While he is far from handicapped, for him , learning English is like trying to learn a foreign language ( memorize words, and if you don't use that vocabulary, you will forget it). The multitude of specialists he has seen can draw no definite conclusions, but have told me that with any oxygen deprivation, the language center of the brain is the first area to be affected.

I could go on and on about my children, but I will spare you. The point I am trying to make is about monitors. There are studies which say they have little value, and to that I say - value to whom? My son Patrick,and my youngest surviving son Tristan did NOT end up needing the monitors ( they both used them of course), but they certainly saved the life of my son Conor. So whether or not each one of my children needed the monitor is a moot point, my family as a whole certainly did. I wish to God I had my oldest son Alex on one.

To those of you wondering about monitors, I hope this helped you in some small way.
Though nothing will ever take the pain of Alex's death away, I know that Conor is alive today because of Alex. I guess that's what a true big brother does - helps in anyway he can.

God Bless you Alex, and keep you safe in His arms, until we meet again.