One Parent's Thoughts on Monitoring

by Dana Siegal,
mother to David (d) and Aviva (4).

My son, David, died at the age of 2 years in May, 1991, from what is thought to be SIDS, although due to his age the autopsy report said cardio-respiratory failure. What a helpful diagnosis!

Nine months later, our daughter Aviva, was born. While she was in the hospital a pneumogram was done, which showed long breathing pauses (of up to 20 seconds) and very frequent drops in heart rate (to the 50s and 60s). After watching the pneumogram alarm every few minutes, my husband said he really didn't want to put her on a monitor. However, when the specialists at Massachusetts General Hospital examined the record, they said she had to be on a monitor, they were very concerned about her heart rate.

She was placed on Theophylline, which worked wonders, several hours after starting it, her heart rate stayed above 100, and never dropped off again. However, the medicine seemed to irritate her stomach, and she threw up often after her dose, and aspirated several times. We had to elevate her bed, and she gained no weight at all until she stopped taking the Theophylline (at one month of age).

She was also on a memory monitor, and had repeat pneumograms at one month intervals. The monitor often had false alarms (and only had one true apnea alarm), but the real problem was that as she put on some weight, we constantly had to reposition the leads, and change them to other types. She left the hospital with the leads on a soft fabric belt (designed for preemies, she was 6 pounds), then we switched to another belt, and finally to just leads, first on her back, then her belly. We probably used 3 different kinds of leads.

Every few weeks, we'd start getting false alarms, and knew that we had to change something. Mass. General has a lab that works with apnea patients, and the 2 nurses there were the only reason we didn't go crazy with the monitor. Every time the false alarms started, we'd call them, and they'd suggest several things, or send us out another type of lead, and things would calm done.

I can't repeat enough that you really need people who know all about the monitors and leads to get you through the false alarms.

Another thing you have to know about the monitors is that you really treat your baby like she's sick. When we went to look at her, we always looked at the monitor before we even looked at her.

Our daughter was monitored until she was 6 months old. When she was 5 months old, her pulmonary specialist said that she could go off the monitor, but it took me another month to do it. If I had been able to, I would have kept her on it until she was way past her second birthday (when our son died), but I knew that we couldn't do that to her.

The monitors, unfortunately, aren't as simple as they sound. However, the specialists have told us that they will insist that any more children we have be monitored (even with normal pneumograms). They don't like the history of SIDS in combination with apnea in another child.

Just giving people considering monitors some more information.

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