The Fourth SIDS International Conference
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The Fourth SIDS International Conference
June 23-26, 1996
Bethesda, Maryland, USA

Some of us attended the Fourth SIDS International Conference which was held outside Washington D.C. The first conference was held in London, England in 1989. Thereafter it was held in the following countries; Sidney, Australia in 1992, Norway in 1994, and Washington D.C. USA, in 1996. The next SIDS International Conference will be held in Normandy, France in 1998. The following are notes taken by Steve and Debbie Ruggiero as highlights during the conference to be shared by others.

Meet and Greet
Opening Ceremony Monday Sessions
Memorial Service
Tuesday Sessions
Wednesday Sessions
Closing Ceremony

Sunday, June 23, 1996:

Sunday evening, the tree of hope was dedicated as a national SIDS memorial. There are over 200 leaves in bronze and brass, engraved with names and dates of our babies. This monument is permanently on display at the SIDS alliance national office. Their goal is to have the tree "grow" to accommodate 1,000 leaves (You can call 800-221-SIDS to get more info on the tree of hope).

Also that evening was an ice cream social for people to meet and get acquainted. There were clowns, magic shows, and face painting for the children. Surrounding the ballroom was a beautiful display of quilts. Several of the Illinois alliance quilts were displayed and a new one from the internet friends. It was very nice meeting all the people that we have talked to over the phone lines for so long. It was almost like a reunion.

There was one room of posters during the conference from different research projects going on. There were also two rooms for merchandise and pamphlets that were available for purchase or free to read. There were many shirts, pins, books, cards, stickers, and more to buy. The internet table had a beautiful display board of pictures of many, many beautiful babies.

Monday, June 24, 1996:
Opening Ceremony

A welcoming letter was read, written by President Bill Clinton, and a video tape was shown from Hillary Clinton. They both sent best wishes for a successful conference and encouraged the research and public awareness of SIDS. There was a powerful speech given by Senator Ted Kennedy, who later received a standing ovation. Pete Petit spoke next. He is the founder of HealthDyne Technologies, a manufacturer of respiratory devices, such as apnea monitors. Florida Representative Mark Folley then gave a presentation, followed by two doctors, one from the NICHD (child health dept) and the other from the Maternal and Child Health Care Bureau.

Keynote Address #1

An excellent presentation was given by Barry Brokaw, a politician from California and a SIDS parent who lost his son, Kevin, 7 years ago. He is a lobbyist and has been able to make a lot of changes in the California legislature. He encourages everyone to write to their state legislature (either the Senate or the House) and he gave examples of changes that have occurred in California.

  1. Every Officer, Paramedic, Fireman, and all Medical Professionals must be trained, before they hit the streets, on what SIDS is and how to interact with SIDS parents.
  2. He got a standardized autopsy protocol passed, including the taking of nondisfiguring tissue samples for research. He said 24 states now have a protocol in place.
  3. He got a SIDS Advisory Council formed to advise the legislature on what SIDS is and show the needs of funding for research.
  4. He helped get "Kiddie" license plates passed (which display a handprint, or heart, or star) where the proceeds go to various children's organizations, including the SIDS alliance.

Keynote Address #2

Fern Hauck presented the results from a Chicago Infant Mortality Study that she conducted. Being from the Chicago suburbs, we were very offended and angry by the results she shared and still do not understand the point she was trying to make.

Within the Cook County, there were 455 confirmed infant deaths within the 1994 to 1996 time frame, where 252 were diagnosed as SIDS (55%). The mean infant age was 86 days, with winter peaks, and 78% were African American. The mothers gave birth around 18 years of age, lived in the housing projects, had average incomes of $3,500, had a maximum of a high school education, unemployed, no prenatal care, used soft bedding, used prone sleeping position, were smokers, and major drug users (with Cocaine being the highest drug use). Basically, they had every possible risk factor. How many SIDS parents do you know that fit into this category?

Memorial Service

Monday evening, after we all survived the tornado, we were bussed to the beautiful Andrew W. Mellon Auditorium in Washington D.C. Two flutists played while everyone arrived and were seated. Earlier, everyone had decorated a felt square for their baby and these were put together into a lovely quilt of around 200 squares. This quilt hung high on the front of the stage.

A large chorus of men and women came on stage and sang several songs. There were several readings and then the reading of the names of all our babies. There were around 230 names read and the people doing the readings did an excellent job of pronouncing all the names. The quilt was then presented to the group, followed by a closing reading. The service was very moving and I don't think a single eye was dry at the end.

Tuesday, June 25, 1996: Keynote II

The opening keynote address was presented by Dr. Adrian Walker, who tried to illustrate a pathway to SIDS. The following is his explanation.

Sleep ---> Respiratory ---> Hypoxemia ---> Respiratory ---> SIDS
Disfunction | Failure
\/ \/
Arousal Gasping

Respiratory Disfunction can occur from any of the following: airway obstruction, central apnea, respiratory instability, rebreathing CO2, or heat stress which disturbs the control mechanisms.

Hypoxemia can occur from low lung volume, anemia, cardiac dysfunction, low venous O2, or suckling (I don't know what he meant by suckling).

Respiratory Failure can result from lower respiratory drive, disordered breathing, cardiovascular instability (affecting blood pressure and heart) or arousal failure.

Arousal and Gasping are normal reflexes which act as a safeway if hypoxia or respiratory failure should occur. The arousal mechanism can fail from a respiratory effect, hypotension, hypoxia, or an airway obstruction. Even if arousal stays intact, hypertension or hypercapnia can occur. The gasping mechanism can fail from a high ambient temperature, a dependence on the age of the child, or if the child is face down in the prone position.

It is not unusual to chart periodic breathing in an infant, but sometimes it can be lethal. The body stores of oxygen are very low for babies and are used up very quickly. The carbon dioxide stores are very high, by contrast. However, as the level of carbon dioxide goes up, it further decreases the levels of oxygen stored. In periods of apnea, the oxygen levels fall and it gets worse with each apnea episode. Normally an increase or decrease in blood pressure produce arousal.

It has been shown with lambs, that if the blood pressure is decreased too much, the lambs won't arouse from sleep. Furthermore, in active sleep, after 10 exposures to hypoxemia (falls in oxygen levels), the arousal ability in lambs was completely lost. It is believed that this repetitive hypoxia plays a large part in the ability to arouse. They are unsure which level of sleep is the most dangerous, active sleep or quiet sleep, but they do believe the oxygen levels pose a larger threat than the carbon dioxide levels.

Session #6 (Growth and Metabolism)

These presentations were difficult to follow, so I only took a few notes. One research effort has found high levels of serum iron in SIDS siblings, based on high iron levels in the liver tissue. They have also found high levels of transferring saturation, based on higher ferritin in the blood. I'm not sure what all this means.

Session #7 (Neuropathology)

This was another very technical presentation. One researcher presented a study where they use DIL injections on fetal brainstems and examined frozen sections. They believe there is a defect in the arcuate nucleus of the caudal raphe. They are researching these neurochemical defects as a possible link to SIDS. Another researcher presented a study where they tested for evidence of hypoxia/anoxia in SIDS victims.

They are investigating the possibility of an event that may have occurred in the days prior to death that started the hypoxic fatal condition. In the SIDS infants they are seeing tissue changes immediately in the autopsy which should only show up after 18 hours of hypoxia exposure. They believe that these patterns of hypoxic changes suggest a long-standing abnormality which is different when compared to infants dying suddenly from other causes, such as a car accident. The importance of this research was that they are now able to isolate specific parts of the brainstem that are used in controlling the response mechanism needed in a hypoxic situation.

Session #22 (SIDS and the Internet)

This session discussed the many features available on the SIDS Web site. Chuck and Debbie Mihalko did an excellent job explaining all that the Web site has to offer, including the following; SIDS information, stories and poems written by parents and friends, discussion groups, emailing to the internet community, a siblings listserver, and viewing pictures of our babies. Several people presented the various options available.

Ned Balzer - SIDS Listserver Jan Hoffman - Pregnancy & Infant Loss Listserver John Carroll - Frequently Asked Questions and Research Information Debbie Gemmill - First Person Stories Steve Ruggiero - Pictures of Love Ellen Siska - Circle of Support Jay Mihalko - SIDS Sibling Web Page

At the end, a wonderfully moving slide display was shown of our babies with music playing that was written by a personal friend of the Mihalkos. Later a cake was brought in to celebrate the birth of Edward Siska, son of Ellen and David who lost their son 5 years ago.

Session #24 (Arousal)

One study discussed the bedsharing of infants. They studied 35 healthy, breast-feeding, non-smoking mothers and their infants over the span of 3 nights. The infants were 11-15 weeks old and 20 were routine bedsharers and 15 were solitary bed sleepers. The first night was the adaptation night and results were ignored. In the following 2 nights, the mother shared the bed one night, and did not the other night. What they found was that mothers were more responsive to their baby then visa versa. During bedsharing, there was no change to REM sleep, an increase in stage 1/2 sleep, and a decrease in stage 3/4 sleep. There were more frequent arousals during the bedsharing, but still more total sleep time. They believe that an infant does not go in as deep of a sleep when bedsharing, breaths more regularly, and arouses easier, thus helping to reduce the risk of SIDS. The skepticism of the doctors in the audience was quite noticeable to me and the concern for overlaying the infant.

In New Zealand, their #1 risk factor of SIDS is smoking, so they do a lot of studies on smoking and SIDS. One study found that babies of smokers have a reduced cardio-respiratory response.

One other research effort studied the arousal from sleep in newborns and how it is effected by prematurity. This group developed a method of measuring arousal thresholds across sleep states for more accuracy. They measured arousal by a change in any 1 of 4 different measurable reactions. Three of these were ventilation, heart rate, and behavior (I didn't catch the 4th one). They attached different leads to measure the different responses. A tube was inserted in the nose and a controlled pulsating air jet was applied which caused a tickling effect. In this way, they avoided unnecessary contact with the infants which can alter results. In preterm infants, there was no difference between arousal thresholds in active sleep and quiet sleep at 36 weeks old, but at 2-3 months, the threshold of quiet sleep was greater than in active sleep. In full term babies, the difference in threshold was noted at both ages. They found that arousal thresholds do seem to be altered by age and sleep state, but prematurity does not appear to have a negative effect.

Session #31 (Couples and Grief)

Presented by Richard Obershaw, who is a grief counselor. He talked about how the loss of a child has a traumatic effect on a couple and their marriage, so if you feel like you are going crazy, that's ok, because you are going crazy (according to psychiatric tests that they give to people with split personalities). His light humor was refreshing and comforting. He talked about differences in how men and women grieve.

Session #3 (Your First SIDS Conference: What to Expect)

This was presented by Gerri Alfano, a SIDS Counselor from NY, and Joani Nelson Horchler, author of the SIDS Survival Guide book, both of which are SIDS parents. First they talked about your reasons for coming to the conference. If it was to find answers, you are not going to find any yet. This can be very disappointing because when you get home, everyone is expecting you to come back with some answers and there just aren't any yet.
The medical sessions are targeted toward the medical professionals. You may feel free to sit in on any of the sessions, but you may get overwhelmed or not understand the discussions. Even though you may not understand the topics, sometimes it is comforting just to see and know all the research efforts underway and see the passion that these doctors have in their search.

Joani Nelson Horchler talked about the importance of finding a positive outcome in yourself from this trauma. Her outlet was in writing her book in hopes to reach out and help other SIDS parents understand and deal with the loss. She gave some examples on how you can sponsor a SIDS fund raiser, be a contact parent, wear a pin or necklace, or write a letter. Anything that you feel comfortable doing to give yourself comfort and keep the memory of your child alive is a positive outcome.

Another idea that was mentioned was to write to the stamp advisory committee to get a commemorative stamp made in honor of all the babies that have died of SIDS. The Postal Service has already created commemorative stamps for AIDS and cancer victims and are willing to print other stamps if people write and request the issuance of a SIDS stamp.

There was some heated discussions that developed from SIDS relatives with strong opinions on the back to sleep campaign and the prone sleeping position. There are many very strong opinions on this topic within the SIDS community.

Session #8 (Subsequent Siblings)

This session was given by Helen Cormack, a SIDS parent from Scotland. Many open discussions developed on how parents have dealt with their subsequent children. I've tried to list as many discussions as I could remember. The biggest issue that a SIDS parents must face is: How neurotic will you/should you be? You will worry more about common colds, being away from the child, depending on that monitor light to blink, and worry every time your child goes to sleep. Many people admitted going into their teenage children's room still, and putting their hand over the child's nose to feel the breathing.

As the child grows up and starts pulling away for independence, you have to be able to handle it. One man said his 5 year old wants to go over to a friend's house to play or for a sleep over and he has the urge to call the parents constantly and to rush to the window to make sure his child is safe while playing outside. Do you tell other parents about your baby so they can understand your "over protectiveness"? Most said yes, but it depended on the situation.

One mother who worries a lot tells her daughter "Remember to give me a call when you get there, you know how neurotic your mother is", and it seems to work. Someone questioned when to tell her 3 year old about the death of the baby. The older children understand, but the 3 year old is saving her toys for her baby brother that is never coming back. Most agreed that at 3 years, children do not understand the concept of death. One lady said she used the concept of a rainbow to explain death to small children. Through stories and seeing rainbows in the sky, her children knew about rainbows and how you can never reach the end of a rainbow (they even went driving one day to find the end of a rainbow and could never get there). The baby was at the end of the rainbow, at this very special, beautiful place and they can not go there yet. Later, in her stories, this "special place" became heaven.

One lady talked about how her sister lived next door and had a 3 year old son who was very close to her own baby son that died. For the first 9 months after he died, she could not leave her house without her nephew running out to tell her that she forgot to take the baby with her. She doesn't believe three year olds are capable of understanding the situation yet.

Another issue was raised as to how much poking and prodding will you subject your subsequents to, just to "make sure" that they are healthy and will not also die? One parent said her son would break out in a hive and scream if he came anywhere near a needle, doctor, or hospital. This is something you have to decide on your own and be comfortable with.

Session #19 (Trends in SIDS)

Several presentations were given in this session. There has been a decline of SIDS deaths in the past year. There are racial differences (blacks are higher). There has been a decrease in prone sleeping. 30% of infants still sleep in the prone position. The Goal of the Back to Sleep campaign is to get this down to only 10%. SIDS varies by state, due to diagnostic shifting. It is unknown if the decline of SIDS is due to the Back to Sleep campaign or a shift in diagnostics.

In Norway, they did a study from 1992-1995. In the 80's there was an increase of SIDS in Norway, Denmark, and Sweden. In the 90's, there's been a major drop. Their SIDS ratio is now only .5 in 1000 and less in certain areas. There's been a decrease in smoking mothers, decrease in prone sleeping, and increase in breastfeeding (which was very high to start with). These results were achieved even though they are not aggressively campaigning on SIDS risk factors. There only coverage is through the media.

France did a study between March 1994 and March 1995 where they conducted surveys before a major SIDS campaign and then afterwards. They found a drop in the SIDS rate, which was 1-2 per 1000 in 1994 and was .6-.9 per 1000 in 1995. Oddly enough though, they did not find prone sleeping to be a major factor in decreasing their SIDS rates.

Wednesday, June 26, 1996:

Keynote - Medical II

Hypoxia and neonatal respiration was presented by Jacopo Mortola. He described the Oxygen used = the oxygen pumped x the oxygen consumed. As the oxygen level is consumed and not resupplied, the systems shut down. During hypoxia, there is a temperature drop and this added temperature change makes the metabolic rate worse. When metabolism goes down, ventilation cannot keep rising. Therefore, hypoxia indirectly effect ventilation.

Session #7 (Risk Reduction Strategies I)

The first presentation was by a New Zealand woman who has started a campaign called "Act Now" to encourage people to stop smoking. New Zealand's number one SIDS risk factor is smoking, so they are looking for ways to encourage people to stop or reduce their smoking. She didn't go into specifics about how they are pushing the campaign, but said that they are having great success in increasing people's confidence to stop smoking. She said that an individual has to get control of the hours, places, or activities that would normally trigger them to smoke. Many people in the audience asked questions to get more details, but she was very vague in her answers.

The next presenter talked about the Back to Sleep campaign. To date, they have sent out 5 million flyers and have set up a new back to sleep homepage on the internet. They developed a new improved tabletop display that holds flyers designed for doctor's offices or any table displays.

In 1992, 70% of babies in the U.S. slept in the prone position. In 1995, 30% of babies in the U.S. now sleep prone. Their goal is to get this percentage down to 10%. SIDS has dropped to .75 in 1000 (which means 1500 fewer babies died in the past 2 years). They plan to continue sending out newly revised brochures and following up with hospitals on material sent out. Melissa Gilbert will be featured in public service announcements for SIDS to broaden awareness.

The last presenter in this session was Kathleen Brasher from Australia. She talked about the decisions to monitor. Monitoring is a constant reminder of the dead baby to family and anyone visiting. It may seem that the monitor puts the focus on the prior grief instead of the new joy of a baby. Each false alarm is a reminder of the day your baby dies. Some people become dependent on the monitors and look at the light before being able to look in the crib. Then there are all the positives of the comfort a monitor can bring to the family. In Australia, the SIDS alliance owns many monitors and donates them free of charge to SIDS parents or high risk SIDS parents to use. Some people find comfort in just knowing that the monitors are available if they should decide to use one.

Session #14 (SIDS in Childcare Settings)

This session discussed the counseling that should be available to childcare providers. Some states have separate support groups for childcare providers so it doesn't make the parents uncomfortable. They also try to get SIDS childcare providers to talk to other ones so that they know they are not alone and to let them know that some sitters continue to watch and take care of children. Most people in the audience agreed that it would be uncomfortable to go to support groups if their baby-sitter or someone else's was also there. They are targeting Daycare facilities and licensed child care providers with Back to Sleep information and support information in case they should ever need to get in contact with anyone.

Gina Grouse-Clement, a SIDS parent and graphics design artist, created a video to be shown to daycare facilities and childcare providers to promote awareness. In searching for a childcare provider for her subsequent child, she discovered that many of them were not aware of the risk factors of SIDS and continued to use prone sleeping. She also felt that the baby-sitters had nobody to turn to for support. So, she created a video, which we then watched. It was a very realistic, difficult video to watch because it hit home to all of us in the audience, but it was very well put together and will hopefully be useful education material.

Session #19 (Milestones and Long Term Grief)

This was a free form session given by Debbie Gemmill. Many people in the audience lost their child from 5 to 20 years ago. What really hit us hard, is listening to the parents talk about the deep pain they all experienced year after year as their own families seemed to forget that the child even existed. Their families never called or sent a "thinking of you" card on the baby's birthday. They never brought up the subject to the parents and didn't seen interested in listening to the parents express their sorrow. Someone pointed out that people are going to forget, but that doesn't mean you will. You will always remember their day and you can do something special in memory of your child.

They also talked about if you 'age' your child. One person said that she considered her child a baby until she would have been 5 years old, then she started aging her each year. Most said that the 5 year mark was difficult because their child should be starting kindergarten. Someone who lost a twin said that as the surviving twin ages, the lost twin would also age in his mind. Some people said that every time they see a 12 year old they look for their child, wondering what he would look like and be like.

They also talked about how to created a 'normal' home environment for your other children. If you are open to the children and talk about their brother or sister that died, they will accept this child as part of the family and talking about the baby will feel 'normal' to them. Many people have witnessed their young children talking to their friends and telling their friends about the dead baby. That is completely acceptable and if the parents of these friends feel uncomfortable about the discussions, then it is their problem to resolve not yours.

This session was upsetting to us, to know what our future holds. It is even more important to us now to do as many things as possible in memory of our son. One of the first things we did when we got home is tell our families about the conference. We told them about this session and about how painful it was for so many parents that their families don't seem to remember the anniversary dates. (ie. We planted the seed; we'll wait and see if it ever grows!)

Session #26 (Keynote - Health Professional II)

Dr. Atle Dyregrov presented the last keynote address. He has spent a great deal of time with all kinds of trauma victims. When someone has experienced a trauma such as SIDS, they are forced to live with traumatic reminders for the rest of their lives. Such reminders might be shaking hands with someone that has cold hands, certain smells, dolls that cry, holidays, seeing other children, going through a new crisis or loss, a new child, and thoughts and memories that pop into your head. Parents need to work through this trauma in order to live again. The consequences of a SIDS trauma are isolation/withdrawal, worry or overprotection, blame, guilt, shame, irritability/distrust, lowered capacity for caring, and problems with intimacy. In children, the trauma can drastically effect their school work, especially if they are also going through a move or change in school. It is important to create a caring environment for your children and your spouse. In order to create a caring environment, you can give your complete attention during discussions, listen, do not interrupt but be active in the conversation, keep eye contact, be honest and direct, let family members talk about the baby when they need to, and show involvement with your body language. A positive result from this trauma could be that you spend more time with your other children, and are more patient and caring in the future.

Dr. Dyregrov strongly recommends parents to seek out counseling or support groups. He recommends themes for future meetings with your counselor or support group. Some of the themes were: discussions on new information or research, facing fears of new disasters, handling traumatic reminders, giving a meaning to the trauma, family dynamics, interactions with social networks, handling guilt and self-reproach, anniversary dates, and changes in values.

Wednesday, June 26, 1996:

Closing Ceremony

First there was a closing panel discussion to summarize some of the key highlights of the conference. One heated topic arose about the Back to Sleep campaign. We all know the importance of encouraging the awareness of the Back to Sleep campaign. The problem comes from the way the media and outsiders (meaning those never exposed to SIDS) over simplifies this campaign - as the solution. "Following these steps will prevent SIDS. If SIDS takes your baby, you must not have followed these 6 steps". . . additional guilt put on the parents.

Yes, those steps will reduce the death numbers, but it is not a cure for SIDS. If the media over emphasizes the reduction, will even less money be granted toward finding the real cause? I guess the important message is to educate people not only on the risk reducing factors but also the definitions of SIDS.

Following the panel, children from a local middle school chorus came out and sang. Small flashlights were passed out to everyone. They dimmed the lights and everyone held up their flashlights as a group of parents marched in carrying each country's flag. Music played and a video was shown of some of the highlights of the conference. Flowers were presented to the committee members that helped organize the conference. Marta Brown announced that she was stepping down as Chairman and Kathleen Dirks (current Vice-Chairman) was stepping in the next conference. Marta was presented with an award for all her hard work in the many years she served as Chairman.

The conference ended with more singing from the children's chorus and more of the conference highlights video tape. Everyone received a souvenir video tape of the conference as they left the ballroom.

These notes are just a taste of what went on during the conference. We hope they were of some benefit for those of you who couldn't attend.

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