Woman; 011; Sudden Infant Death Syndrome

An in-depth look at every region of the world women who deal with some mabuti. Good evening. Tonight's hot topic is Sudden Infant Death Syndrome or crib death as it's commonly known. Our guests this evening include Miss Judith Choat the executive director of the National Foundation for Sudden Infant Death Syndrome. Ms. Lynn run for the president of the local chapter for western New York and Mr. Paul Dyson who is also a member of the National Foundation for Sudden Infant Death Syndrome. Each one of our guests tonight has lost a child in this very tragic way. Judith what are crib death exactly. How does it occur. Well first I guess we best give the clinical description crib death sudden infant death syndrome is the death of a apparently healthy baby whose death remains unexplained after a complete post-mortem it occurs and probably one of the most tragic ways in a kind of death

can occur. A baby is put to bed either naptime or for his normal nighttime sleep. He's a healthy baby a thriving baby. Sometime in the night or in the morning hours when his mother or father go into the nursery the baby is dead. At what age does this usually come. Well it most frequently occurs between two and four months. The instance has been likened to what we would call a bell shaped curve that goes up and it goes down its highest peak is between two and four months it happens before that happens after that. Does this have anything to do perhaps with the fact that the antibodies which are supplied by the mother previous to birth are sort of dwindling and antibodies which the baby is about to manufacture are not perhaps yet as effective as they might be and it's sort of in a transitional stage. It's a theory it's a theory that has pretty much been discounted. I guess my favorite description of what the death of a baby to the

sudden infant death syndrome is like is by a very fine pathologist from the West Coast. He says it's rather like an atomic explosion. A number of things have to be there at the same time to mesh and have this occur. It seems to happen more frequently when respiratory illnesses are around and about whether that is the trigger mechanism. We don't know. It's not predictable. It's not preventable and we don't know why it happens. So does it come more frequently in the winter months. Yes. Yes. And always when the baby is asleep. Well we do know of cases where the baby was not asleep who was in them. The mother's on. But. But let's say that perhaps 99 percent of the cases are sleeping babies. You know very often people think only at night but it can certainly happen during a naptime grip about morning time or afternoon nap. But most frequently absolutely no warning of this nothing whatsoever the

baby may may have a minor cold or minor nasal nasal congestion. But under normal circumstances no there is no you cannot look at a baby a specific baby and say this baby is going to be a victim. Usually when when people keep saying Well can't you can't you tell I they very often show them a photograph of my son that was taken the night before he died in his playpen. And here is a bloomy 5 month old little boy with not a sign of illness a smile on his face. And that was the same baby that was found dead in his crib nine hours later. Absolutely tragic. Do you find sometimes though that this occurs more than one time in the family. Is there any indication that it could be genetic. We don't think it's genetic. I can assure anybody that it won't happen again just as I can assure you that when you get up from this couch you might not trip over that table.

It does happen more than once and frequently. Your chances of it happening the first time are one out of 350 babies. Your chance of having that second time is still one out of 350 babies How about breastfeeding babies as opposed to babies who are on regular milk. Well that's my my favorite theory because it's one that is still abundant all over the world people say you know breast feed breast feed your babies and they won't die. They won't get colds. Well I can assure you that unless my my son was given a supplementary ball in the hospital when he was home and for the five months he was with us he did not have anything but breastmilk you know there's been all kinds of theories in the past that strangulation suffocation and even choking perhaps on regurgitation might be a factor involved and very often you find a baby with its face down in the crib. Even in cases covered with a blanket. Do you think these

theories can be completely disregard. Well we know number one. Sometimes I feel as though suffocation is a word I'd like to eliminate from the English language. I hate that word. Babies don't suffocate. There was a research project done by a guy named Dr. William who I think is you know must have been a remarkable man because he of course couldn't find human subjects to find out where the baby suffocate so he used his own children and when they were newborns in the hospital he covered them with blankets and pillows didn't hold them down to cover them. The babies always found an air passenger I think he proved once and for all the babies do not suffocate Unless of course someone goes to great lengths to do so. So we know that that's not true from a good many years of sudden death syndrome has been known as the disease of theories. Everybody and I can assure you I've been involved in this for a very long time. Everybody has a theory from orange juice to feathers and pillows in a baby's bed

getting in the baby's ear causing their death. Whiplash was a theory and because it's it's particularly tragic because it is a cause is not you know so that every guy coming along who has any kind of theory whatsoever. The media will pick it up immediately and some guy says whiplash whereby he knew that was babies at birth in the birth canal suffered an injury to their neck. So every paper in the country picks that up and everybody who reads that has lost a baby. You know my baby was not delivered right. You know we could have prevented that we could have seen that. It's not true. It just is not true. And that's one of the reasons that we exist is to get rid of all that garbage and it's garbage. Right. I mean how big a problem you feel this is in the United States. I mean what is the approximate number of babies that die in this way every year. It ranges anywhere I guess from 10000 to as high as

25000 actually. So that must be one in how many years three out of three out of a thousand. Those are the snake. There's a lot that are undeclared. I mean it could be a lot of parents don't have any idea about us IDSA in any way. And there is no investigation done or no true autopsy done. So if the doctor simply writes down suffocation and they maybe wait five six seven eight years before doing any real investigating around they figured out that it wasn't possible and they may go along with the sudden infant death theory. How does this rate in comparison to other diseases I mean just between 10000 to $25000 that must be almost the number one killer. It is. More babies die of sudden infant death syndrome and will die kids

will die of heart if they will die of muscular dystrophy. All those diseases that we know so much about all those posters that you see you don't see posters about Sudden Infant Death Syndrome. But there's a heck of a lot more babies die. Why don't you. Mainly because the National Foundation doesn't have the money to buy. If you want to know the truth. But beyond that the disease itself was not identified as such until 1969. The foundation itself has been around since 1962. Only within the last couple of years has there been any kind of recognition. In the meantime all these parents have been being told their babies died. And a number of things and we now know that safe. I mean I'm saying safely 10000 babies a year maybe more. That's the figure we use is to get the federal government uses it is the number one cause of death. And when you think that it is second only to accidents the deaths of all children between the age of two weeks and age 15.

So a lot of deaths a lot of empty schoolrooms. When was the first case recorded. Biblical biblical. Really. Yes. I used to be able to quote it exactly. It's one kings I think now everybody's going to go look and I'll be wrong but referred to was overlain as it was referred to for many centuries. Even Bruce Beckwith it was a fine pathologist in Seattle. He went back and looked in medieval writings and found reference to overlain and medieval writings. So it's been a as you were talking earlier on about the guilt feeling which is almost universal amongst mothers It seems to have lost children this way the sort of feeling of self-incrimination. I can certainly empathize and understand the shock and the terrible sense of grief but why do you feel guilty. I mean why do you feel any more guilty if you lose your child this way than say from meningitis or being called for there's no warning that you have

absolutely no warning at all. So it's just something that you find asking yourself did I miss something. You know I must've forgotten something. What is it that I didn't see. What is it that I did wrong you know. Did he sleep too long didn't eat enough. The questions are endless just endless. If there's another child in the hatchways you find yourself asking did my son or daughter do something to the baby. Did the dog bite the baby. Any excuse really. You just have to have any. It's just not that easy to accept something that doctors don't know anything at all about. You know I've I've read stories about parents who are treated like criminals after their child died. Even locked up in jail and in certain cases. And

you know just suffering the most appalling humiliation is still the reality is still going on. Judy just took care of the family. We have. First I'd like to add what Lynn said that not only is the family faced with questions but if nobody reaches out and nobody gives you any source at that moment and they don't believe me they do know that there is a creepy subject for most people in itself so everybody turns up there. And then the doctor says these things happen and going further if there's an autopsy it might say aspiration that somebody else might tell you. No that was suffocation so that not only are you sitting there not knowing anything but other people are telling you something different. So that is it. That's why they go there. Yes. Families are treated as criminals. They just recently in New York City young black family was jailed for six months and six months later the case was brought to

trial. And the case was dismissed. And Charlotte North Carolina in July of this year a young white family was jailed even in this instance which even makes it more frightening. The baby was sick and within 12 hours a death certificate was released and Sudden Infant Death Syndrome and because bureaucracy family remained in jail the father did was not allowed to go to Vegas. Even though his family raised $200 as kind of bonding money to get him from the jail to the cemetery back to the jail and child abuse was just automatically of memories from many many of them. Lynn what were your experiences like what what what what what how did the people around you treat you. Dr. Frist as your relatives public officials and so on. Well first thing we couldn't get a doctor to come watch us. None of them wanted to get involved. Why not.

Because simply because of the stigma attached to it when there's a baby found dead if it's not your patient to begin with you really don't want to stick your neck out. Really my pediatrician was almost 15 miles away in the next town and wouldn't come anyway. The closest hospital to me was about 11 miles across the county line. So by the time the rescue workers finally came which was an hour and 30 minutes later about the only thing they could tell me was after they gave me oxygen they said we think he's going to make it. He's really going to make it. And they put him in the ambulance and just as they were going out to drive the dentist next door came over and asked if he could help. He's the only one that offered to help and he's a dentist. So we had to cross the county line. And when you crossed the county line you get involved in another county police department

our town police department was bad enough. The questions the endless questions just what sort of questions What time did the baby go to bed. Why did the baby go to bed so late. Didn't the baby wake up for its feeding. What did you feed the baby when the baby woke up. How many chances does he usually take. So this sort of attitude is one of the main contributory factors to the it was just me introspection sort of impose upon from time. Right. It was just an automatic suspicion and say it's a stigma that goes along with sudden infant death syndrome. We had more problems trying to get the baby buried was a big problem. The funeral director held us up. We couldn't get the baby buried. He was afraid because the investigation was closed. We didn't have any more me to pay actually. So we had to rely on our life insurance policy and the life insurance company wasn't too eager to pay because of the results of the autopsies.

And it was just a comedy of errors if you like state police dropping in three four months later routine investigation and then they would come like 7:00 o'clock in the morning and here's why I wasn't dressed just how she dressed Chad. Just trying to see if you're rational if you could be possible. You know are you possibly capable of child abuse. Could it have been actual child abuse. You know. This is a good deal more of a recent experience for you than it is either for Judah's offline so it's much harder for you to talk about it but I'd like to ask you when did your doctor see the baby before it died. Approximately one week before one week. And how did you find that. How did he find the baby. The baby was in perfect health. So what was his reaction to the deaths. We'll go to the pediatrician that my wife was going to say that he had never heard of this

sudden infant death syndrome. So he wasn't really very helpful and he did not examine the baby to our family doctor examined. And he found the baby imperfecta. I must say I like it a little easier time the buffalo rescue squad. I call it when my wife woke me up. I was sleeping at the time. She woke me up and she should do so I called the rescue squad and they were there and four minutes before police arrived afterward and the fall from the rescue squad stayed right with the baby. And so we went to the hospital where he was pronounced dead at the hospital and also we received help from the doctor at Memorial Hospital chief of pediatrics at my memorial. How soon after the death of your baby did the organization the National Foundation for the sudden death syndrome get in touch with you.

I was contacted one week after and I have to say that this has to be the best thing that ever happened because all the questions were coming up and we had no answers. We received the booklet in the mail and all the questions were answered and just went through everything we wanted to know. That's great. How do you get your leads. What is the procedure in contacting people. Well for us nationally it's very difficult of course. I mean there's no way possible good or one staff person staff could be Cervi family that lost baby we must lie. And that's one of the reasons here too is we have to rely on the community organizations community parent group has to lie on their medical examiner and they have one depending on the system. Some of our chapters have areas where the medical examiner sends the name of the family to them and they do the

contacting other areas the medical examiner himself will write a letter to the family and closing our blue pamphlet which is called facts about Sudden Infant Death Syndrome and gives them the name of the local pain and other areas. It's Helter-Skelter reading obituaries of people hearing about you getting your name in the paper so that if the family loses a baby they'll know who to contact for a good many years we were somewhat concerned about what is termed invasion of privacy. I'm going to knock on somebody's door when their baby had just died. But I know that over the years and it's been eight years that I've been working for the foundation. Most families say that that was the thing that kept them together. The fact that somebody called them somebody said Here's your questions can be answered. Set timeline to sanity and a very very difficult. Do you get any adverse reactions. I mean do do people sort of

feel that. Well this is like reopening the wounds. You know that they just want to be alone with their grief. Right. But interestingly enough most of those people who feel that way take her information first and then feel that way. We're not a joining kind of group we don't go out and drum up membership and say if you've lost a baby you have to work with us. But I can also on the other hand say that if it was not for people like Paul and then there wouldn't be any national foundation. It is a volunteer effort that is brought about by the concern of parents people who are treated like Lynn who see that some years later pool gets better treatment. And we hope that five years from now and that's a goal we've set for ourselves that there will not be one family in this country that will lose a baby a sudden death syndrome and feel any more guilty about it than any family who loses a child from meningitis leukemia or any other recognizes disease. It's getting better but it's not good enough.

Well how effective do you feel being right now. I think pretty effective. I mean I think the whole idea is phenomenal that we've had Senate hearings. Got money appropriated if the AGW bill is ever passed by the president. It's there. We've got the National Institute of Child Health and Human Development to actively solicit research from the scientific community which was one of our goals. We are getting more and more cooperation from medical examiners across the country. More and more people care our growth as far as chapters and or commute as you might call them community organizations. Two years ago this year we had this month. We had eight chapters we now have 25. That's phenomenal tremendous I think. I think we're doing OK and we're doing OK on gut strength of families who say no no it's not going to happen.

I'm not going you know and sometimes I will really freely admit that there are many nights when I say you're nuts. What are you doing this for. It's depressing. You know it's frustrating. And then I'll get a letter from a family that breaks my heart and I say I'm not wrong I'm not crazy it is a problem of major significance what research is actually being done into the disease. There are this year I think about 10 really good research projects a couple of years ago one or two. It's work being done in Syracuse. It's work being done in Seattle Philadelphia Los Angeles New York a couple of southern cities Great Britain very fine work some work being done in Australia in Czechoslovakia. So there is work being done it's got a long way to go. How how what would you like to see changed from the present situation right now you were talking a little while ago about autopsy's Mirikitani.

Generally I'd like to see a cure. Generally yes. In our area we need a lot of major changes. A lot of overhauling and a lot of weeding going bureaucracy into the health offices that we're dealing with we can't seem to make physicians and experts accept the fact that this disease is happening and it's happening in this area in vast numbers. It's also very important. Autopsies must be performed on the babies. Nationwide this community every community. The autopsy results must be given to the family within 24 hours after the autopsy is performed. What is the procedure now anywhere here. Well let's talk about here here then. Generally it depends. When I go you know we talked a long bit about what went on here.

And every answer was It depends. Depends on who you are where your baby does where it goes whether it gets to the right place or the wrong place. It's not satisfactory. Paul still does not have a death certificate and your baby died when he went in June. Why is this ruckus. We have a family who lost a baby in the beginning of March. And it needs no death certificate either. And him. It's in your mouth you've got. And the thing is we're dealing with Examiner unfortunately. So we have the right of way with the medical examiner or medical examiner is very good very interested even willing to do some research if the possibility would arise that her hands are tied. She can only do so much. That's why statistic wise in our county we only had three medical examiners cases for the year ending 71. Rochester had 22. We had three

Buffalos large of them Rochester. The problem is that the hospitals aren't being cooperative with medical examiner's office. They're not releasing autopsy results. These are hospital autopsies. These aren't medical examiner autopsies and this is where the bureaucracy is taking place. Having to get through to a board of trustees and get them to understand that look this has to be changed. It's unfair it's it isn't even good mental health to drag it out like this. How do you make somebody that is never going through it never even read about it never even understood it. Change a law. What is the situation regarding funding your financial situation. The National Foundation. That's a laugh. I mean we could have a conversation about how the Foundation operates operates on

voluntary contributions. It operates for the first on this year I must own up to the fact that we did receive two small grants from outside foundations private foundations. But it operates on nickels and dimes. As I said one person that said you know when somebody said whereas I just don't get it. You're looking at it with the three of us you're looking at it. Every parent who has a baby it is probably the only it is the only United volunteer effort. I know in this country we do not have a large office. We do not have a staff. We we operate on True Grit. I just believe in what we're doing is right and somehow when the bank gets down and nothing somebody sends us $10 to send something else and it's it's it's phenomenal when you think that for instance my postage just for the national

office in New York not counting what all these people and chapters are putting out of their own pockets. Last month was $350. My printing expenses which are all the literature that we distribute free of charge was $4000. So would you say that the number one problem is money. It's you know the money for research is there with the federal government the money for educational campaigns is not there. Paul thank you very much. Thank you and good night. In. An.

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