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"General Monitoring Issues"
Our child will be six months old on the twenty-sixth of May. It has been suggested that we discontinue monitoring at this time. I am not comfortable with this. Can any of you speak to the issue? Am I being unreasonable? What is the standard for monitoring SIDS siblings when two deaths have occurred? Does it make a difference that both other deaths occurred in the first three months? Taking a baby off the monitor is always difficult. Some parents just aren't ready when the doctor thinks the baby no longer needs to be monitored. In general, at the start of monitoring a SIDS sibling we tell the parents that the baby will be on the monitor for a finite time. This is usually until the anniversary date of the sibling or about 6 months. Certainly some parents are not ready to give up the monitor at this time. We generally continue to monitor these babies. By one year of age all of our SIDS siblings are off the monitor. You are not being unreasonable. You should start to use the monitor less often, perhaps only overnight when you and the baby are sleeping. Don't use it during the daytime when the baby is awake or napping and you are right there with him, especially when the doctors think there is no medical reason to continue monitoring. Putting a baby on a monitor is often much easier than taking them off. JDDeCristofaro, MD
In general, if a family chooses home monitoring for a SIDS sibling, we recommend monitoring until 6-months of age, unless the SIDS baby died at an older age (in which case one monitors past the age of the SIDS death). The exception is if the baby is having significant apneas or low heart rates, in which case further diagnostic testing might be indicated, and/or the baby might need to be monitored for a longer period of time. The reason for the 6-month limit is that SIDS peaks between 2-4 months of age, and 95% of SIDS deaths have occurred by 6-months of age. Further, IF a monitor might prevent the death of a baby, it would presumably do so by alerting the parent to an apnea or low heart rate. It seems unlikely that an infant would have one of these events which is serious enough to cause death if he/she had not been having apneas detected by the monitor before that time. Thus, infants might still die from SIDS beyond 6-months of age, but there is little chance that it would be due to an apnea or something which the monitor might detect and stop. Remember that home monitors have not been proven to reduce the SIDS recurrence risk in SIDS siblings regardless of the age at which it is stopped. I hope this helps. Thank you. Tom Keens
I am interested in finding out more info on the costs and where to rent or buy a monitor. The monitors are provided by DME (durable medical equipment companies) like Apria (aka Homedco), and a host of others. These companies have made contracts with many of the health insurance companies so that patients with a particular health insurance will need to go through DME company "ABC" for all their home medical equipment (monitors, oxygen, suction, etc.) So what they actually get paid is based on their contracts. Those without any coverage can expect to be billed for $200-$300 per month by the DME. Then there may be doctor bills if there are monitors that record events and need to be interpreted. An apnea monitor can be purchased by this hospital for $2000- $3000 depending on the model type. JDDeCristofaro, MD
There have been a number of emails regarding research about FLUCTUATIONS in breathing being a potential indicator of SIDS. Is there any prospect of this finding making its way into a monitoring device any time soon? I think that the kind of information you are talking about- heart rate variability and breathing variability is built into the CHIMES monitor. It does both recording of events as well as continuous waveform recordings in the study babies. If the CHIMES study shows that there is a strong predictive value in any of the parameters they measure, I am sure every baby would be tested. While this is possible, subtle differences between SIDS and non-SIDS may not be immediately obvious and may come out years after the study is completed since we know that analysis of these kinds of studies continues for years. JDDeCristofaro, MD
1) Pneumograms are not predictive of SIDS and should not play a role in whether a SIDS sibling is monitored. Unfortunately, some insurance companies insist they be done and only if they are abnormal will they approve a home monitor. 2) Some insurance companies will approve an apnea monitor only if there are 2 SIDS babies from the same family. This really seems unreasonable to me and I disagree and have fought with companies on this point. 3) Monitors have not been shown to prevent SIDS. However, we all have our stories about this baby or that baby whose monitor alarm alerted the caregivers to a real event where the parents intervened and the baby survived. Would that baby have self corrected without any intervention ?? No one knows for sure. 4) It is not always that easy to get a SIDS sib a monitor: A letter from 1995 to our local SIDS Alliance: ------- I am the Medical Director of the Infant Apnea Program At University Medical Center at Stony Brook, NY. Today, 7/10/95, I was informed by Metropolitan Life Insurance Company that apnea monitors are not standard medical equipment for SIDS siblings and therefore are not covered by insurance. I now have a Long Island family with a SIDS sibling at home with a monitor that their insurance will not cover !! I just cannot believe they (Met-Life) can do this. Please send this letter to whomever you wish to get some response. I have written a letter of medical necessity to them that was rejected. J.D. DeCristofaro, MD PS>>THEY NEVER PAID FOR THE MONITOR. JDDeCristofaro, MD
Are there any statistics indicating whether home monitoring has reduced the incidence of SIDS? The quick answer to that question is "no". Around 1982, Al Stenischneider did put together some information from the Baltimore area, which he hoped would speak to the issue about whether home monitoring had reduced the SIDS rate. He followed SIDS deaths in infants born at the University of Maryland, where he ran a home monitoring program, and compared them to the SIDS incidence in infants born at Johns Hopkins, where home monitoring was not offered. The SIDS rate was lower from the University of Maryland. Doctor Steinschneider speculated that this might be due to home monitoring. However, these data were not persuasive, as they have not emerged as a strong defense for home monitoring. Similarly, around 1982, Bruce Nickerson, then at Oakland Children's Hospital, analyzed California SIDS rates before and after 1980. Home monitoring was not generally available in our state before 1980, but flourished after that. There was a decrease, and he again speculated that the drop might be due to home monitoring. Subsequently, it was found that the Pathologist performing the majority of SIDS autopsies in Los Angeles County (about one-third of California SIDS deaths) had changed, and that she used different criteria to make the diagnosis. I think we now believe that the "drop" in California SIDS rate around 1980 was due to a change in diagnosis. Aside from this, SIDS rates do not seem to have fallen in temporal association with home monitoring programs. Thus, this information is generally thought to support the concept that home monitoring has not reduced the SIDS rate in places where it is used. I hope this helps. Thank you. Tom Keens
Unfortunately, normal pneumograms are not predictive of SIDS. We have no test that reliably predicts which infants will die of SIDS. That is why our Infant Apnea Center does not test SIDS siblings. If we do a pneumogram test and it is normal, it does not mean that the baby is therefore "safe" and will not die of SIDS. Even recording monitors are not predictive of who will die. They have been shown to be more predictive than pneumograms for which preterm infants will continue to have events at home. But this may be because of the duration of these 2 tests (the pneumogram is <24 hours continuous recording of heart rate and respirations and the apnea monitor event recorder was used for 1 week recording a+b events). For SIDS siblings the parents either want them monitored or do not want monitoring. We recommend no testing and will stop monitoring at around 6 months or after the anniversary age of the first infant as long as there have been no real events for 2 months (just like most centers). We are really very limited in what we can offer SIDS siblings. Almost all our SIDS parents know about the methods recommended to decrease the risk. Apnea monitors while not shown to be preventative, will alert caregivers to a real alarm situations, beeping for apneas or bradycardias. This is not to say that many of these infants would not have come out of these events on their own. Until something better comes along (another monitor, 'cotwatch', infrared video tape, or whatever ideas you have) apnea monitors are all we have. Yes it may give parents a false sense of security as it does me !!! At this time we have nothing else to offer. JDDeCristofaro, MD
If a child truly dies of SIDS, a monitor is only going to alert me to the time of death. This statement conveys the idea that "if a child is going to die of SIDS, nothing (including a monitor) can save him/her". I don't think it's true. I know of no scientific evidence in support of such a statement. Concerning monitors not being shown by studies to be 'effective' in reducing the incidence of SIDS... one could point out that "absence of evidence is not evidence of absence". That is to say, just because we have no evidence that monitoring (as practiced in this country in the past) reduced the overall incidence of SIDS, does not mean that it is not effective in some cases or that it couldn't be effective when used for the right infants. In my opinion, the reason monitors "didn't work" in the past was likely because we were monitoring the wrong infants. In other words, the indications for monitoring were wrong. My primary concern in writing this is that both parents who choose to monitor and those who don't receive support in this forum. I think both sides feel a little defensive and vulnerable here. Hi and thank you for these insights into the decision-making process. You are certainly correct that it is *extremely* difficult to make an informed decision about monitoring because the information available does not provide a clear answer. As to your comments, Dr. Carroll, there is certainly anecdotal evidence that SIDS deaths have occurred while the victims were on monitors; that's probably where people have gotten the idea that monitors don't save babies from SIDS. Yes this is true. I was a co-author on one of these studies with Bob Meny, Tracy Carbone, and Dorothy Kelly. In that study we reported infants who died while attached to functioning memory monitors. Drs. Meny and Kelly have published another paper reporting another group of infants that died while attached to functioning "smart monitors" (memory monitors). However, the fact that the monitors failed to prevent death in these cases does not prove that monitors cannot work to prevent a death. The reported cases were chosen precisely because the monitor failed. We didn't report the many times that parents have told us that the monitor went off, the parent responded, the baby looked blue or pale and was bradycardic or not breathing, and the parent used vigorous stimulation or CPR and the baby revived. Of course, you could argue that we cannot possibly know in such instances whether the baby *would have* died without the monitor, and I would agree completely. This is one reason it is so difficult to study this. On the other hand, even with the reported cases, there was evidence that in these infants the monitor didn't go off soon enough. What I mean is that those studies showed a decline in heart rate occurring quite a bit ahead of any apnea. In fact, apnea was usually the last thing to occur. I think it is likely that the infant was not able to be resuscitated in many of these cases because it was "too late" by the time the parents were alerted by the monitor. The physiological changes were likely too far advanced for resuscitation to work at that point. Dr. Keens has discussed "non-resuscibility" on this list before. In these cases the monitor certainly did fail and, to me, this means we need better monitor technology. In one of the cases we reported the mother responded to the alarm by turning the monitor off. About 1 minute later she noted that the infant was blue and started resuscitation but it was apparently too late. I think you might have a valid quibble with the use of the word "truly", as if the death of a child on a monitor who suffered an event from which s/he could have been resuscitated is somehow not SIDS. I don't mean to imply criticism at all. I'm just raising the question because it seems crucial to this discussion of monitoring. (Tangent: A line in Warren Guntheroth's book really clarified things for me when he wrote (my paraphrase) "Just because a baby suffers from some identifiable life-threatening condition, such as a heart defect, it is absurd to maintain that this condition confers some special immunity against SIDS"). Then there is the question of possible brain-stem damage in an infant who was resuscitated, and whether or not such resuscitation proves, in the long run, to have been "the right thing to do". This is always a question. My other question is this: If we're not monitoring the right infants, if the indications for monitoring are wrong -- who are we to monitor if not SIDS siblings? I thought there was a (albeit small) increase in SIDS risk among SIDS siblings. I think the case for monitoring is strongest when there is identifiable apnea or another condition which should be watched; other than that, I don't know how one would decide. There just isn't much more to go on. When I said we were monitoring the wrong infants and possibly the monitoring the wrong things (apnea/heart rate) I was referring to some of what Dr. Keens has been discussing. Dr. A. Steinschneider published a paper many years ago suggesting that apnea might be associated with SIDS. This caused, for many many years, an over-emphasis on apnea. We now know from several large studies that the presence of central apnea is *not* a predictor of SIDS. We now know that the criteria that doctors were using back then to prescribe monitors were apparently incorrect. Much of this came out in the 1987 NIH consensus conference. We now know that pneumograms have no predictive value at all (in predicting which infants will died of SIDS). So, the great majority of kids monitored over many years because of apnea on pneumograms were probably not at risk in the first place. What they used to call an indication for monitoring we now call normal. The CHIME study is even further opening our eyes about what is normal in terms of development of breathing control in infants. The results of recent studies on breathing control development in normal children are quite remarkable (but that's another subject). In addition, while placing an undue emphasis on apnea in the past, they were not aware of the importance of low oxygen levels. Unrecognized low oxygen levels are now known to be a major risk factor for ALTE and the data strongly suggest for SIDS too. So again, for decades there were many high-risk infants going unrecognized while low-risk infants with normal apnea were the ones being monitored. So, in my opinion, the fact that historically monitors haven't been shown to work just shows that doctors didn't know which kids to monitor or which kids were really at high risk (we still don't, but we know more now than they did back then). What do we know about SIDS? Well, there is a great deal that we don't know. There is evidence that there may be subtle underlying abnormalities of breathing control, evidence that infants who died of SIDS experienced low oxygen levels before death, and evidence that some interventions can and do reduce the risk. The sleeping position data indicate that some deaths that would have been classified as SIDS (in Australia or New Zealand, for example) have been avoided by these RTR programs. The current theories of SIDS suggest that SIDS is likely due to some combination of a vulnerability plus a stress. This suggests to me that *if* one had a machine that could detect signs of this happening, and *if* it would alarm early enough, that the parent would at least have the chance to attempt intervention. In my opinion one of the major problems in the U.S. is the inadequacy of the technology. For example, I think it would be much better to monitor oxygen saturation than just apnea/heart rate. Apnea is probably 'too late' and heart rate may also be a late event in the sequence. If oxygen levels are as important as we think, then this would be the thing to measure (as the do in England, for example). There are likely other variables that would be more useful to monitor than the ones currently monitored. I'm not saying that current monitor technology fails in every case. I think we know *some* ways in which it can fail. We know little about how effective current technology is. The CHIME study is a huge step in the right direction towards answering some of these questions. I think life and death decisions are really hard, and each person needs to decide for him/herself what constitutes "extraordinary means". A person who chooses to monitor her/his infant is making a different judgment in this regard than one who chooses not to monitor. There may be a price that someone who monitors pays, in terms of being so tired that s/he can't pay close enough attention to a hazardous situation an older sibling gets into. If it isn't the case that this is a judgment call, then the door is thrown open to castigate anyone who doesn't leave their at-risk subsequent infant in the ICU for the first six months, and I wouldn't fault anyone for not doing that. Part of the decision of how far *I* should go to protect an infant (Answer: as far as *I* can) is a non-medical one: if, despite the efforts I chose to take, the unthinkable happens, will I regret that I didn't do more. Can one really know this in advance? I believe that if my subsequent son, had died of SIDS, I would have felt pretty bad about not having monitored him. But I also believe that if I *had* monitored him, and he died anyway (as does sometimes happen), I wouldn't feel much better. Final thoughts: I wish there was a study of the effectiveness of monitoring, which controlled for the things Dr. Keens mentioned: same state, same time, same autopsy protocols, same risk levels of the infants involved in the study. And I wish that all insurance providers would acknowledge differences of opinion, and cover monitors based on the doctor's recommendation (in conjunction with the parents' wishes). Your perspective is one that all 'professionals' working in this area should be made aware of. Thank you. I have to say that I too am unclear about what the 'right' answers are. I'm not gung-ho pro-monitoring. As I said, I don't like the current technology, I think the technology could be much much better, and I think the indications for home monitoring of infants need much more study and could be improved even using existing data. Usual disclaimers: I don't mean to criticize anyone for making the decision to monitor. I apologize for the length of this post. And I truly appreciate the contributions made by Dr. Carroll to this forum, all of them! Same disclaimers. I do not mean any criticism what-so-ever of anyone's decisions. There are good arguments on both sides of the issue. Thank you. John L. Carroll, M.D.
The device you're referring to is an oximeter. Some very interesting data has been coming from England for years (work of Poets, Southall, etc). The basic idea is that the damage is done by low oxygen levels. Similarly, one of the factors that may predispose or create dangerous situations is low oxygen levels. So, these investigators reasoned, if oxygen level is the important variable, then why not monitor oxygen levels in babies at home? They did this (using several techniques of measuring oxygen) and reported the results in several excellent studies. It makes sense to a lot of people that oxygen (using oximetry or other techniques) level is the thing to monitor if you can do it. Apnea appears to have little to do with SIDS and bradycardia is a late finding, probably the result of low oxygen levels and/or acid in the blood. In any case, bradycardia is likely a late finding and by the time it develops it may be too late. The problems with designing infant monitors that monitor oxygen are mainly technical and cost. It is difficult to avoid many false alarms with the current technology. Also, the cost is very high compared to heart-rate/respiratory monitors currently in use. However, many would agree with the basic idea that oxygen level is an ideal thing to monitor if it can be done effectively. Thanks, John L. Carroll, M.D.
I was asked a question a week or so ago about the usefulness of monitoring babies for blood oxygen levels, rather than apneas. The question was prompted by Doctor Carroll's discussion about apnea monitoring in infants. He suggested that maybe we are monitoring the wrong thing, and that maybe we should be monitoring oxygen levels instead of apneas and slow heart rates. As has been mentioned on this SIDS-Net, we do use a pulse oximeter in the home as part of the CHIME Monitor. A pulse oximeter is a device which measures blood oxygen levels by shining a light through the baby's finger or foot and measuring how much light is absorbed passing through the finger or foot. It is an accurate technique which is commonly used in hospitals. However, one major problem with the device is artifact due to movement. In the hospital, where patients are being watched by nurses, these monitors can quickly be replaced. However, in the home, there is not always someone there to notice that the monitor is not working. Therefore, they are not as accurate in the home as a 'monitor' which would alert the parent to a potentially dangerous low oxygen event. Therefore, most people have been reluctant to use them at home because of a high incidence of false alarms (sounding an alarm when movement dislodges the sensor). In the CHIME Monitor, a pulse oximeter is used to record oxygen levels, but it is not used to sound an alarm. The reason is the high incidence of false alarms. In fact, the pulse oximeter signal is either invalid or not being used at all at least 50% of the time. Therefore, pulse oximetry may ultimately be a good monitor to use on infants to detect low oxygen events. However, at present, the technology is not quite good enough to make this a practical monitor. There is a fair amount of research ongoing on how to improve a potential in-home oxygen monitor, so things may change in the future. I hope this helps. Thank you. Tom Keens
2/10/97 To the Doctors: I, too, have been having several nagging questions. I hope you can help. 1. Can an autopsy tell the difference between a SIDS death and an apnea death? 2. Is it known whether the heart slows (bradycardia) before a SIDS death. And if so, if the child is on a monitor and the monitor goes off as a "slow heart", is this considered a "near-miss" SIDS (assuming the child is revived). I have heard conflicting information. First - there is no such thing as a "near-miss" SIDS, and other "experts" have said there is. I think this is important for those thinking about subsequent children/monitoring. 3. Being involved with the SIDS alliance and this network, I have come to notice several "common denominators" with SIDS infants - again not with every case but with most. One that I haven't heard anyone else bring up is weight. Most infants that have died at least here in Oklahoma were "well-fed" "roly-poly" infants - many over 9 pounds at birth. My own daughter was 9 pounds at birth and 18 pounds at death. It has come up too many times for me to ignore this. Has anyone ever related this to SIDS/entered that into the research/done a poll, etc.? 4. Can anyone tell me how an apnea monitor tells the difference between a "loose lead" and an apnea episode? My baby's monitor went off once saying loose lead although it was apparent to myself and husband that she had an apnea episode - had to be stimulated. It then malfunctioned and didn't shut up at all - any ideas? I will try and answer your questions. 1. "Apnea" is not a cause of death, except that it can presumably be part of the final event(s) in some SIDS infants. In any such deaths, the autopsy would not find any explainable cause for the death, hence "SIDS" would be the final diagnosis. 2. An apparent life-threatening event (based on observable symptoms, not just a monitor alarm) that is unexplained is now called Apnea of Infancy. The old term was "near -miss SIDS," but it was changed because of the uncertain relationship to SIDS. Slow heart rates have been noted in some SIDS infants. In regard to subsequent siblings, no specific heart rate abnormalities have been observed in this group of infants; the most encouraging perspective is that even in the highest estimates of SIDS risk in subsequent siblings, about 99% or more will do very well with or without a monitor. 3. Please see another message I sent today. Weight gain has been studied in detail; as a group, SIDS infants do not gain weight quite as well as non-SIDS infants, but still within the normal range. 4. It is my preference that all home monitors be "memory monitors," so that it is possible to have a recording of what was happening with each alarm. It has been my experience from looking at recordings that what the monitor thought was a loose lead was always correct. This does not change what you saw, but it does mean that the monitor could not identify a breathing/heart rate problem because the leads were not making good skin contact at that moment. I hope these comments are helpful. Dr. Carl Hunt
03/04/97 One thing my visiting nurse neglected to tell me about monitor use is that if the baby is sleeping with someone else - like mom, dad or sibling - or something else with a beating hear - like the cat, the monitor might mistake the electrical signals from that person instead of the baby and not catch a ceased heartbeat or apnea. I am unaware of any data to indicate that the home monitor would detect heart or respiratory activity from an "adjacent" pet or other individual. Although I must admit I have not considered this potential artifact before, I doubt that it would be a problem. I hope these comments are helpful. Dr. Carl Hunt
April 16, 1997 >I found out today that my doctor and hospital will put our new baby on a In our monitoring program, that tracks over 100 babies on monitors at any given time, we use almost exclusively the Healthdyne SmartMontior. The commercially available version monitors respiratory movements (chest movement), heart rate, and electrocardiogram. It can be set to alarm for apnea of various durations as well as dips/drops in heart rate. It also has some other settings that we don't use much (such as high heart rate limit). As far as conventional home monitors go, the Healthdyne SmartMonitor is a good quality memory monitor. It has the limitations of any conventional monitor... it is prone to artifact/false alarms, it cannot detect obstructive apnea, it doesn't directly measure oxygen levels, and its detection of breathing pattern and heart rate patterns is crude. However, it will alarm if the baby stops breathing for longer than the set limit (usually 20 seconds) or if the heart rate falls below a preset limit (usually 80 beats/min in newborns) for more than 5 seconds. As has been discussed here before, new monitors are being tested (the CHIME study) that measure oxygen levels and have a more sophisticated way of monitoring breathing pattern. If this is available in your area it might be an option. Dr. Hunt or Dr. Keens might have more to say about this. I feel that the Healthdyne is "better than nothing", although I would have to acknowledge that conventional home infant monitoring technology is limited and long overdue for upgrading. Hope this is helpful,
Date: Wed, 17 Sep 1997 Our son has apnea (4 month old). He had two alarms last night and two the night before. When they downloaded the monitor last week, he had had 69 recorded events in the past month, 2 were alarms over 20 seconds and 67 were between 16-19 seconds and had not alarmed. My doctor said that Josh is doing well because he's getting himself out of them on his own. Does that make sense? I'm concerned because the number of recorded events is rising, rather than falling as he gets older, he went from about 20 a month to 40 and now to 70? He does seem to be sleeping deeper, is this the reason? When would we expect them to start decreasing again? This is not unusual. Some infants fill up their memory monitors sooner as they get older just because they move around a lot more and get more false alarms. Also, as they grow the leads on their belt tend to rise under their armpit and this results in more false apnea alarms. The belt works by measuring the movement of one lead from the other lead and as the baby breaths, these leads move to and fro. If the leads get stuck under the armpits, they will not be moving away from one another during breathing; the monitor alarms for apnea. In addition, as an infant gets older his heart rate naturally slows. This becomes most pronounced at rest. What we see is more low heart rate alarms or records in the presence of normal respirations during sleep. This is our clue to set the heart rate alarm lower. Also, let me say a word about monitor events. The monitor will report how long an apnea it has recorded and can print this out on a sheet. The accuracy of these events must be determined by the physician. It needs to be interpreted. They are (usually) never completely correct. I have abandoned printing the monitor's report of the longest apnea or lowest heart rates out or reporting them because they are simply wrong. They report apneas when they were just not picking up chest wall movements. This is why they need to be interpreted. The function of the monitor is to alert you to a potential problem. It is not a perfect technology. It is up to the parents to decide whether the baby is in need of any intervention. If the chest leads are not moving during respirations, an apnea alarms will sound. We ask our parents to wait for 10 seconds (beeps) for the baby to come out of this on his own (as long as the color is normal). If after 10 seconds the monitor is still beeping, we ask our parents to touch the baby to get the monitor to stop alarming. If the baby is blue or pale with the alarms we ask that they touch the baby during the alarm. Finally, as your doctor has told you, your baby is recovering spontaneously from all of these recorded events. He is not turning blue. These are good signs. I hope this helps you, JDDeCristofaro, MD |
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