Monitoring Subsequent Babies

I would like to know your honest, gut feeling about monitoring subsequent babies. Would you or not if you were in our shoes? I'm inclined to want to co-sleep but I guess that wouldn't be feasible with a monitor.

Right now we have such mixed emotions. We're happy to be pregnant, afraid of a miscarriage, tired, nauseous, and frustrated that there is so little we can do to keep our next baby from dying.

A doctor's perspective:

I too have mixed feelings about monitoring. I have not had a SIDS death in my family but like most parents I too was concerned when my children were infants. I did not have an apnea monitor at home. If I did have a baby that died of SIDS I think I might have a monitor for the subsequent siblings but I am not sure.

The pros of monitoring is that it will alert the caregivers to potentially life threatening events and allow for intervention and institute infant CPR. I think that monitoring is the best technology that we have available today. It also is easier to understand how it might make a difference when compared to a change in sleep position. It gives parents a sense (false sense ?) of security, well being and empowerment; this may enhance a parent's self confidence.

The cons of monitoring are that it may offer very little to SIDS siblings. In general, medical studies have not shown any significant change in SIDS incidence after monitoring was introduced in the home. It puts added burden on the parent's activities. For example, it makes trips to the store more difficult, finding baby sitters more difficult. It may change the way you view and react to your "vulnerable" child. Most monitor alarms are false alarms. It can be expensive.

All in all, I know apnea monitors can make a really big difference in infants with unresolved apnea of prematurely. I am not convinced that they do all that much for SIDS siblings.

I recommend that if a parent has decided that they want an apnea monitor in the house for their subsequent I will support them 100%. If they are not sure about monitoring and they are consulting me they will almost always have a monitor in their home.

Apnea monitors alert parents to prolonged apneas or low heart rates as defined by the alarm limits set by your physician. Any physician can order or write a prescription for an apnea monitor. Most Pediatricians and Family Medicine doctors do not know a whole lot about the monitors or the alarms. Parents who have this technology in the house should be seen by a physician that is experienced with these monitors and cares for many of these type of patients each year.

Although a physician can order an apnea monitor and write that it is medically indicated or necessary, the health insurance company may not cover this expense in all of their types of health policies. The insured would need to have DME coverage (durable medical equipment) in their policy. If it is not covered the patient is responsible for the payment to the DME company. Many insurance companies have formed contracts with respiratory companies to be their preferred provider of DME. This means that if you have the coverage, you can use the equipment (apnea monitor) from 'DME company A' with little or no expense or from 'company B' and pay for it yourself..

These are just my opinions and I hope this helps.

JDDeCristofaro, MD
Assistant Professor of Pediatrics
Medical Director, Infant Apnea Program
UMC Stony Brook, NY

A parent's perspective:

You'll be happy to know that a monitor won't impair your ability to co-sleep. The cord is plenty long enough for you to have the baby in bed with you, even in between you and your husband. You just have to make sure you let the cord drape over you, not under you (less likely to pull loose if you turn), and you should be just fine. I put my two "subs" in a porta-crib beside my bed, and when they woke to nurse, I just pulled them into bed with me. The monitor was sitting on the nightstand beside the bed.

I know you directed your question to the physicians, and I'm no physician :) But I can tell you from this parent's stance, I was very glad I used the monitor for both subs. I kept the leads and lead wires on the babies at all times (in case they fell asleep, as they often did), so that I could easily "plug them in" without waking them. But I only "hooked them up" when they were actually sleeping. That way, they had plenty of freedom of movement while awake.

It would be helpful if you could actually see a monitor before you make a decision, so you are more clear on what I'm talking about. We've had respiratory therapists bring a monitor to support group meetings in the past so that parents could see them and hear how loud the alarms are :) The volume is similar to that of a smoke detector.

They're not all that troublesome to use while traveling; they are about the size of a VCR, and come with a carrying case. At home, we always kept the charger plugged in so the battery was fully charged to use away from home. Fully charged, the battery is good for 24 hours. We always used it in the car, because you know how babies are about falling asleep in the car . . . And if you have a stroller with a basket underneath, you can just put the monitor in there and off you go! We used it when we took them to the mall, though I admit, we didn't take them out too often because I was afraid they might get a cold, etc. But when they *did* get the inevitable cold, I was *extra* glad I had the monitor :)

I'm aware that some parents have found dealing with monitors to be stressful, but in my case, it was the opposite. It was VERY comforting to see the green lights blinking for every heartbeat and every breath as my babies slept. All you have to do is look at the green lights to know that the baby is okay. It really cut down on that "freezing at the door" as you walk into the room to check the baby, as described in "The Subsequent Child", because you know that if you didn't hear an alarm, the baby is fine.

As for false alarms, it's a matter of becoming experienced with the proper placement of the leads. My son was a shallow breather, so if the belt was placed too high on his chest, the leads didn't pick up his breathing. Once we were informed about that by the respiratory therapist, we didn't have any problems. And on the topic of false alarms, if you get a loose lead, you will know that immediately just from the sound because the alarm will sound continuously until you turn off the monitor and re-connect the loose lead. Thus, you will know that nothing's wrong with the baby. You can also differentiate an apnea alarm from a heart alarm by the sound because with an apnea alarm, it will beep once for every second that the baby doesn't breathe; heart alarms are double beeps. We only ever had heart alarms when it was time to adjust the setting for a slower heartbeat, which is normal for a baby as he or she grows. In our case, the respiratory therapist came to our home once a month to see the baby, to see the alarm log we kept, to answer any questions we might have, and to review CPR as needed.

You would be wise to spend some time with the daycare provider to educate him/her about the use of the monitor well ahead of time, so that he/she can get comfortable with it as well. It is best if you can arrange for the respiratory therapist to do the educational part with the caregiver (and grandparents or anyone else who may be left to watch the baby). This can be done at the monthly visits as well.

Ellen Siska
esiska@CTC.Net 

A doctor's perspective:

I have to start by saying that I am not really in your position. I am not a SIDS parent. Therefore, any opinion I might give you would not have the same underlying fears or concerns that you might be feeling. Therefore, I will start by telling you what I tell SIDS parents who come to us with the same question.

The first question is what is the SIDS recurrence risk for siblings of SIDS victims? Are they at higher risk? A review of the nine available studies in the literature might suggest a slight increase in risk. However, we know that these studies are not all perfect. Further, there are subgroups within the larger SIDS siblings group which have a very high risk (siblings of 2 or more SIDS, twin surviving sibling of SIDS, etc.). These may artificially increase the apparent risk for the more common subsequent siblings of one previous SIDS victim. Putting this all together, I "believe" that the recurrence risk for siblings of one previous SIDS victim is at or near that of the general population. This is currently about 1 per 1,000 live births in the U.S.

Second, if SIDS siblings are not at substantially increased risk, the next question is, do home monitors help? Unfortunately, there are really no studies that show either 1) that home monitors reduce the SIDS recurrence risk in siblings, or 2) that home monitors do not reduce the SIDS recurrence risk in siblings. Therefore, there is no scientific evidence on which one can make the decision to monitor or not. On the other hand, there are probably few risks of home monitoring for families who have been well trained in a reputable apnea program.

Third, there are no tests which can be performed which accurately predict which babies will die, or which babies are likely to have serious apneas. Therefore, one can not really decide the question based on testing. We do not recommend any routine tests for asymptomatic siblings of SIDS victims.

Thus, finally, this boils down to a decision for and by the family about what they feel is best for them. Some families tell me that they are tremendously reassured by having their baby on a home monitor, and that it reduces their anxiety. From my point of view, if reducing parental anxiety improves the family's ability to parent the child, this is a reasonable use of home monitoring. Other families would be more stressed by having their baby attached to an electronic monitor. For them, in the absence of scientific evidence of efficacy, home monitoring should probably not be used.

Unfortunately, our science is at the point where we can not give you good advice based on scientific information.

I think it would be prudent to try to adhere to as many of the "Back to Sleep" recommendations as possible. It is worth pointing out that back sleeping now appears to be the safest, even safer than side sleeping. However, you all know that even these recommendations do not guarantee that a baby will not die from SIDS.

I hope this helps. Thanks.

Tom Keens
Childrens Hospital Los Angeles

January 20, 2003

Hi Dr. Keens. My first daughter died of SIDS in October 1996. She didn't have any risk factors except for her age (16 weeks) and the time of year. I am now expecting my second child, another daughter, March 3rd. I thought I recalled reading after my first daughter died that the chance of a second child dying of SIDS was extremely low, like 1 in a billion, or in other words, it simply didn't happen. Recently, I have seen a number of articles, one in a recent "Parents" magazine, citing being a SIDS sibling as an actual risk factor for SIDS. I was quite alarmed. I have also had people tell me stories of families having a number of SIDS deaths in one family, which made me think of cases where deaths that should have been further investigated by authorities were ruled as SIDS deaths. So now (already wrought with anxiety at being pregnant for the second time!), I'm feeling very confused as to which extreme is the case - is my daughter more likely or extremely unlikely to die of SIDS since her sister died of SIDS? [Incidentally (or maybe not!) this child's father is not the same (we ended up divorcing and I have since remarried)]. I read your reply online about it being no more or less likely to occur in a subsequent child but still feel concerned about reports of a previous SIDS death being an actual risk factor and my conflicting thoughts about whether more than one SIDS death in one family being reason for deeper investigation into the subsequent death(s) by authorities. Do you think that it is more likely that subsequent deaths ruled as SIDS in fact involved foul play, as opposed to a genetic predisposition towards a SIDS death? Thank you very much for your time.

Thank you for your E-mail. Our current thinking is that subsequent siblings of SIDS victims are NOT at increased risk for SIDS compared to the general population. They are probably at the same risk as the general population, which is about one-in-2,000 live births. However, it is possible that subsequent SIDS siblings may be at even lower risk because SIDS parents are more likely to be aware of "Back to Sleep" recommendations than the general population, and may thus decrease this baby's risk even further. Reports of multiple SIDS in families, such as in the book Death of Innocents, were in babies who did not have a complete post-mortem investigation including an autopsy. So, it is possible that these babies died from something else. There are a very small number of families who have had two SIDS deaths, but the chance of this is about one-in-4,000,000. I append an answer I gave previously about how minimize the risk of SIDS in a subsequent sibling. Enjoy your new baby.

Tom Keens
Childrens Hospital Los Angeles