There is no easy way to lose a child. There is no disease or event that is preferable, and no age or point in time
that makes a difference. Although parents who lose children may frequently empathize with others and say things like, “I’m glad that didn’t happen to me in addition to what did”. As time passes, we feel an almost universal kinship with anyone who has lost a child and have a strong sense that of all our grief experiences, the death of a child is the most difficult. We all have the conception that in the scheme of things, parents are not suppose to outlive their children.

I am a different  person from the young woman I was just before my child died. I don’t feel changed in a radical sense, but I am changed. As I look in the mirror I see the many new lines across my face, the sudden abundance of white hair and a total weight gain of eight kilos. Sometimes I have difficulty remembering that young woman who was the mother of two children, a daughter of 4 and a son nearly 6 months, a person who could resent the moments when everybody was cranky and hungry at once and sleep seemed a remote experience, and a person who also reveled in the joys and experiences of motherhood. Tucked into those days were the joys and strains of every day living, my husband starting a new business, and me trying to find a place for myself in the working world. It was a good time, laced with the happiness and minor dissensions that are part of living.

And in one hellish moment, all of that changed. Changed as swiftly as if a bomb had been dropped into the core of our lives. Changed on a bright sunny winter morning when I picked up the rigid, lifeless, distorted body of our young son. Changed as swiftly as he must have died. Part of the hell was the fact that his death was not expected. Part of the hell was the fact that the year was 1987 and after many years of research, medical science can not agree on a cause or find a cure for SIDS, a phenomenon that kills thousands of young children all over the world. Most of the hell came simply from the fact that he was dead and all the events that followed because he was dead.

I’m grateful for the haziness that enveloped me from the beginning of that terrible moment. The attempts of both
my husband and myself to resuscitate the tiny little body, and my own rejection of the deadness of him. After that first moment of discovery my inability to touch him. The horrendous anger and denial that the cold body could ever have held the personality of our son. The decision of what to do with our 4 year old daughter, who was sick with a high fever afraid to move from her bed, but aware that something was wrong. The loud scream that came from deep inside of me, the confusion of the arrival of the ambulance team followed by concerned neighbours, all I could think of was how will I be able to explain this to my daughter, that her beloved brother will no longer be here. I didn’t understand it myself.

The calls we had to make to family across the country and abroad. Only two hours after finding my son dead we are
on the way to the cemetery. I remember my husband laughing and saying to me, “this has to be some sick joke or dream, I just don’t believe this is all happening.”

Before noon we were back at home which marked the beginning of Shiva. Those 7 days I was in a fog as our many friends, neighbours and family came to be with us many not knowing what to say or how to say what they felt inside. I really don’t know how I smiled and made small conversation to things that had very little meaning. I know that I just wasn’t really there. I performed as carefully as a well-rehearsed script, except that the performance was staged in unreality, done to ease the pain of others but done mostly because it really wasn’t happening and tomorrow I could wake up to my two children and only think of the nightmare I must be dreaming.

The first twinges of reality came the day after the end of Shiva, came with the onset of a thunderstorm and the realness that my son was out in the rain, sleeping in a small grave among other children. I had never left a child in the rain before and the franticness of that reality was a reality in itself. The haziness was comfort: reality was sheer terror.

There is discomfort in looking back and remembering the endless days that followed the Shiva. The discomfort comes from the human desire to acknowledge the fragility of others, but not of ourselves. They were days that passed for living, just barely going through the motions of day to day life.

The sudden death of our beloved dog, Tanya who was ‘accidently’ poisoned by the city’s dog catchers, came only weeks after my son’s death. That fact that she had been a part of our family even longer than my son brought with it my own thoughts that we were locked into a bizarre twist of fate where all the members of our family would die. I checked sleeping people in our household with regularity of an intensive care facility and felt singularly responsible for their ability to breathe.

As a non-working mother I had to face long quiet mornings at home, the emptiness overwhelmed me. When I look back, one word describes it best of all. Lonely. No matter what the activity or how many people were around, it was a lonely, vacant time, disruptive to our total sense of living. I like to think that we did a good job of covering up our feelings, that on the surface we performed normally. It was the feelings just under the surface of that cover that held that enormous void. In the beginning only a mention of good times involving him could bring conversation to an uncomfortable standstill.

I became the perfect overprotective, smothering parent to my independent daughter. I was afraid to let her from my sight for long periods of time but also afraid to accept the responsibility for her care. I tried to become her constant companion and playmate, even when she was begging to go off to play alone with her friends. I was using her to fill my void. I marvel that either of us survived those early months.

As winter turned into spring, I was preparing my daughter’s Purim costume thinking only of the costume my son will never have the chance to wear. At the Passover seder I couldn’t help thinking what it would have been like if my son were there in my arms – such empty arms.

I wanted another baby, but I was terrified of having one. It disrupted my relationship with my husband in many
subtle ways. We talked, but we didn’t talk. We shared, but we didn’t share. He was alternatively strong and compassionate and angry and unfeeling. Our sex life was marred, tenderness and need can get lost in the fear of pregnancy and the fear of being incapable of good parenting. And just fear in general.

Much to my surprise I did become pregnant. Just as I was getting over the thoughts and fear of can I really go
through with this, I mis-carried, which was the lowest point of all. The pain was real almost as if I lost another child. The months that followed were as sterile as my inability to become pregnant again.

When do you start to “get better”? The landmarks don’t exist until you can get far enough away to start to look back
at them. Landmarks are really events that you are finally ready for. For me it was the urge to fight back, I looked for a support group for parents like us and after not finding one I started my own. After putting an advertisement in the newspaper, I found myself talking on the phone to many other parents. For each of us it was the first time we had ever really talked to anyone “like” us.

The release inside of me, of so many locked up feelings can only be described as nearly exhilarating. It was a strange blend of hearing other people say what I had been feeling and feeling along with them what I was hearing them say. When we finally met as a group, it can only be described as a warm reunion of very old friends, we were not strangers.

To get involved with other parents was landmark in itself. The help and support I received from relatives, friends and community professionals to begin my group was positive. We all work out our greatest pains in our own ways, and there is no right or wrong for each of us, just different ways. Grief is very self-centered. I sometimes feel a sadness for the too many lonely days that might not have had to be if I had known the simple truth, that I need not have been isolated. I’m only grateful that somehow I learned it.

I am writing this two days before what would have been my son’s 1st birthday and again I can’t help but think about the party I’m not planning nor the cake I’m not baking nor the future he might have had. I know I have a long road ahead of me but I am not alone because I am also a parent of a child who has died.

Over years of working with families that lost their baby suddenly we gathered a lot of information about feelings, thoughts, and questions families might have. The information here is based on the experience of other parents and was edited by professionals.

If you are the parents of a baby who died suddenly, you must be overwhelmed and feeling a very painful feeling of emptiness. The suddenness, the lack of control, and the fact there was no clue that something bad is about to happen is shared by many parents in your position. The feelings of pain, grief, and sadness are mixed with a sense of guilt and even accusations or retrospective clues, as if you could have avoided what had happened. The death of a baby or a child is always a traumatic event, but a sudden death leaves the parents and relatives in shock. You are probably going in your heads again and again over every detail of what happened. The loss causes deep pain and a sense you can not take the intensity of the sadness. It is highly important that you realize there are no specific symptoms preceding a death of this kind. Unfortunately it can happen to any one of us, the best, most loving, and caring families.

What is the Sudden Infant Death Syndrome (SIDS)?

Sudden Infant Death Syndrome (SIDS) is the medical name for a sudden death of infants until the age of one year, when the cause of death remains unexplained even after a thorough examination by doctors and investigation of the infant’s medical history. It usually happens when the baby is placed to sleep in his bed and a while later is found dead. The death is painless, without any suffering, sudden and quiet. SIDS is the main cause of death of infants until the age of one year.

One of every 1000 infants dies of SIDS every year. Even though the causes of SIDS are unknown, it is important to know the following:

SIDS is not caused as a result of a specific disease, suffocation, pneumonia or negligence

SIDS is not contagious

SIDS is not caused as a result of any vaccine given to the baby

SIDS does not testify to child abuse.

The reference to a sudden and unexpected event

The death is unexpected, it is sudden, it occurs without any advance notice and without the ability to prepare for it. It violates the natural order of life and affects the entire family from that day on. Thoughts that usually come up are “if we had only …”, or “why did it happen to us…”.

Know that you did not cause the death of your child and you could not have prevented it. This is not your fault.

Time to grieve

The minutes, hours and days are all mixed together. You probably feel confused, out of balance, sensitive and vulnerable. When the initial shock passes feelings of sorrow, emptiness and loneliness will appear. You will feel sadness mixed with anger, thoughts of injustice and, naturally, longing and hard feelings. All these are very common. Parents who experienced a death of a baby talk about physical pain in the heart, a feeling of pressure in the chest, and some say they often moan. All these reactions are common in situations of grief.

Many parents say that this is the strongest pain there is. Occasionally they ask themselves if they can take the intensity of the pain, if they can survive it at all, if they will ever find any meaning to their lives. Maybe you too find it hard to concentrate, to do simple activities, to make decisions. Some feel physical pain, such as headaches, lack of appetite, dizziness, a lump in the throat, insomnia and loneliness. Some say they feel like they are going mad, they keep hearing the baby crying at night, or they keep waking up to take care of a baby who is no longer there. Remember that all the symptoms are normal, and they do not indicate to a loss of your mental health.

Remember this too: you are not responsible for your baby’s death, there was nothing you could have done to prevent it.

Influence of the loss on the parents

The loss affects both parents at the same time, and the sorrow is so deep each one tries to deal with it in his own way and finds it difficult to relate to the other. It creates a situation in which the person who usually supports you through hard times is now busy dealing with his own pain and can not always react and respond to yours.

Sometimes, the death of the baby is the first loss the parents experience. You should know that every person grieves in his own way. You might find it hard to learn to accept your spouse’s way to grieve, but in order to overcome the difficulties you should try and talk about them and about your feelings openly, despite the difficulty. An atmosphere of openness and cooperation between the two of you will help you cope as a couple with the private grief of each of you.

Siblings’ response to the baby’s death

The brothers and sisters are also affected by what has happened. Children who are too young to understand the event require love and affection from their parents. They are also having scary thoughts which they are unable to express, such as “did I cause my brother’s death?”, “am I going to die too?”, “will mom and dad die too?” “am I still a big brother?” “who will protect me now?”

The children will probably want to be near you, and may even try and do things to get your attention. It is important for them to know that they are loved and protected. Older brothers and sisters will experience feelings of grief according to their age and other experiences they have had in the past. They might often feel guilty because they might think, unjustly, that they caused the death of their brother or sister. Try and explain to your children all the facts according to their ability to understand. Try and express your thoughts and feelings openly. The openness will help the children express their feeling freely and to ask questions which bother them. It is very important to explain to the children that sudden death (SIDS) only happens to small babies and not to older children or to adults.

What will happen next?

You must be feeling exhausted, confused, and very sad while trying to get back to life without your baby. There will be many more hard days when your head will be bothered by questions, such as:

Why my baby?

What did I miss?

If it is not my fault, why do I still think “if I had only…”

“why didn’t I check on my baby one more time that night?

Why didn’t I take my baby to the doctor when he had a cold?

Why did I go back to work so soon?

If no one found out the cause of my baby’s death, maybe I caused it?

I am angry, frightened and exhausted, am I losing my mind?

There must be a reason for my baby’s death, why won’t anyone tell me what it is?

The process of grieving may last a long time and it continues even when the feelings of nervousness, restlessness, anxiety and depression subside. The first year is the hardest. Every parent goes through his own process in his own pace, but it is usually a cycle, initially triggered by guilt and an obsessive need to find the cause of the event and discover more details. Many parents feel unexplained fear of another disaster which they fear is about to happen soon. Losing sense of time and difficulty in performing the most simple tasks are common responses. The daily schedule changes in many aspects. Even shopping for groceries or visiting friends become tasks which are hard to do. After a while you will return to most of your daily activities, but you have the right to choose not to do things which are painful, or which require too much an effort on your part. It is your choice and it may be changed with time, according to the way you feel.

Important to remember

Grief and recovery are parts of a continuous process which resembles passing through a long and dark tunnel. You need strength to go through it and the agony is great. Most people agree that the process can not be completed quickly and in any way you can not control it, but close people to support you, and doing things which are good for you and your children will make it easier for you. In a certain sense people, memories, and being kind to yourselves are small candles in this dark tunnel. They will light your way and give you comfort. Grief is not an enemy, it is a friend. It is a natural process of walking through the pain and the sorrow, and it enables you to slowly overcome, merely by walking through it. Stop for a second and tell your relatives and yourselves: “please don’t take from me the need to grieve, I need to experience the pain and the sorrow, and I will overcome it together with you”. Try not to avoid the hard work in the process of grieving and prepare yourselves to the hard times that will come. They will be like waves in the ocean, sweeping you away, but you will manage to keep your head above the water. Let yourselves be carried away with the tide, don’t waste your energy fighting it, the ability to swim will return. Don’t be surprised if it takes you a long time to feel good. Eventually you will overcome. Gather hope. Grieving parents say that with time, they overcome, even though they don’t forget. Occasionally you might experience again the tunnel experience, but it will not happen every day, and not even very often.

Dealing with special dates or holidays

The first year after the death of your baby is the hardest. On its first birthday feel free to celebrate if it helps you. It is only natural to laugh and cry together.

Some grieving parents choose to celebrate and participate in festive events as before, but discover it is too hard for them. They might avoid talking about the deceased baby. Others choose to do things which are completely different than those they used to do in the past for special occasions or holidays and try to balance their participation in those events, while dealing with their pain, sadness and longing for their baby. All those are hard and personal choices.

The family usually gets together for happy or sad occasions. Relatives and friends usually accompany, support and listen when needed and help dealing with the loss. But even the closest friends will not understand the intensity of the pain you feel. They wish to distract you from the pain and sadness, to give you hope for better times, and see you get back to “ordinary” life, or help you forget what has happened.

But no one can take away the pain you feel. There will be better times for sure, but they will be different without your baby. Your life will not be “ordinary” again. Don’t ever forget your baby. Yet, it is all right to enjoy life. Your baby does not expect you to be sad all the time. Laughing and crying together will help you in the process of healing. Searching for fun things to do will help you find your way back to life. Your other children are entitled to the full attention of loving mother and father who are focused on them, on their development, their joys and difficulties.

Find it difficult to cope?

If you feel you can not cope with the disaster and with the grieving process on your own, or you feel the need for support or professional counseling, we invite you to contact us. Many people here would be happy to help you.

The baby should be placed only on his back whenever he is asleep (when awake he should get enough tummy time under adult supervision)

1. The baby should be placed on a firm mattress and not a soft surface (a surface which does not sink under light pressure
2. The baby’s environment should be smoke free (mothers are highly recommended to avoid exposure to smoking even during the pregnancy)
3. Overheating should be avoided – the recommended temperature is 22 degrees Celsius
4. The baby should be placed to sleep in a separate bed in the parents’ room until the age of 6 months (bed sharing should be avoided)
5. The baby’s bed should be kept free and clean of any object, including toys, pillows, and bumper pad
6. The blanket should be tight under the baby’s shoulders, and the baby should be placed on the lower third of the bed in a Feet to Foot Position
7. It is recommended to breast-feed the baby and give him a pacifier when he is put to bed (after the age of one month, when he is already accustomed to breast-feeding)

Brainstem Serotonergic Deficiency in Sudden Infant Death Syndrome

Jhodie R. Duncan, PhD; David S. Paterson, PhD; Jill M. Hoffman, BS; David J. Mokler, PhD; Natalia S. Borenstein, MS; Richard A. Belliveau, BA; Henry F. Krous, MD; Elisabeth A. Haas, BA; Christina Stanley, MD;Eugene E. Nattie, MD; Felicia L. Trachtenberg, PhD; Hannah C. Kinney, MD

http://jama.ama-assn.org/content/303/5/430.full?sid=0b3f8228-3710-4dd3-becd-d9d9c52ae062

The study was conducted by researchers from the Children’s Hospital in Boston and was published in the renowned Journal of the American Medical Association (JAMA), and it suggests that the possible cause of infants’ death from SIDS is a low level of serotonin in the brainstem.

In the study, the researchers compared the brainstem of infants who died of SIDS with brainstems of infants who died from other known causes. They discovered that in the infants who died of SIDS, the level of serotonin in the brainstem was 25% lower, and the enzyme tryptophan hydroxylase, in charge of the synthesis of serotonin, was 22% lower compared to the control group. The receptors’ level of connectedness to the serotonin was lower in three different areas of the brainstem among 29-55% of the infants who died of SIDS. These findings indicate that a lack of serotonin in the brainstem may be the cause of the infants’ mortality.

Furthermore, researchers found that in 99% of the infants who died of SIDS there were one or more risk factors, such as being placed on their stomach. Two or more risk factors were found in 88% of the infants. Hence the importance of creating a safe sleeping environment and avoiding factors which endanger the infants’ lives. Parents and caregivers should be aware and alert for taking proper care of the infant, because infants who suffer from this defect appear completely healthy and there is no way of telling which one of them may be the victim of SIDS. These finding support the theory that infants who die of SIDS suffer from a hidden condition which is only expressed under specific circumstances which cause a distress during sleep.

The team of researchers from Harvard University and other researchers continue to investigate and examine whether the genetic defect, or the circumstances of its creation are environmental. In light of the assumption that the defect is created in the fetus’ brainstem during pregnancy, it is very important to avoid smoking and alcohol consumption during pregnancy.

Serotonin is a neurotransmitter, which connects between the neurons in the brainstem and is in charge of controlling and regulating vital functions such as breathing, blood pressure, body temperature and the awakening mechanism. Infants with a serotonin deficiency suffer damage to the ability to wake up and respond to life threatening conditions when they are asleep, such as an increase in the level of carbon dioxide while sleeping on their stomach. Healthy infants who do not suffer from the defect recognize the lack of oxygen, wake up and their body can overcome the problem. An infant who suffers from a serotonin deficiency will not wake up and will die in his sleep.

Dr. Anat Shatz adds:

Unfortunately, there is no accurate data available regarding Israel, because autopsies are not performed, as required for diagnosing SIDS, in order to deny all other possible causes of death.

SIDS is the leading cause of death of infants between the ages of one month and one year. The Central Bureau of Statistics estimates the number of sudden and unexplained deaths of infants at app. 40-60 a year. According to data published in previous years, the non-Jewish population suffers from 2 to 3 times more cases of a sudden and unexplained death during sleep, and in the Bedouin population – 4 times more.

Instructions for protecting the baby’s health and reducing the risk of SIDS

1.  The baby should be placed only on his back whenever he is asleep (when awake he should get enough tummy time under adult supervision)

2.  The baby should be placed on a firm mattress and not a soft surface (a surface which does not sink under light pressure)

3.  The baby’s environment should be smoke free (mothers are highly recommended to avoid exposure to smoking even during the pregnancy)

4.  Over heating should be avoided – the recommended temperature is 22 degrees Celsius

5.  The baby should be placed to sleep in a separate bed in the parents’ room until the age of 6 months (bed sharing should be avoided)

6.  The baby’s bed should be kept free and clean of any object, including toys, pillows, and bumper pads

7.  The blanket should be tight under the baby’s shoulders, and the baby should be placed on the lower third of the bed in a Feet to Foot Position

8.  It is recommended to breast-feed the baby and give him a pacifier when he is put to bed (after the age of one month, when he is already accustomed to breast-feeding)

Crib death is the common term used to describe a sudden and unexpected death of an infant, which is originally unexplained. The medical term is Sudden Infant Death Syndrome (SIDS). Some of the cases of a sudden and unexpected death may be explained, such as accidents, quickly developing lethal infections or certain metabolic conditions. Only the cases which were carefully examined and remained unexplained are defined as cases of SIDS.

The definition in the medical literature: a sudden and unexpected death of a healthy infant which remains unexplained even after completion of the post mortem examinations, including a forensic autopsy, a death scene investigation and an examination of the infant’s medical history. This definition creates a diagnosis by exclusion – all possible causes which may explain the death should be denied and only then can the diagnosis be SIDS.

SIDS incidence

SIDS is the main cause of death between the ages of one month and one year; 99% of the cases occur before the age of six months; in Israel there are approximately 60 cases of a sudden and unexplained death of infants a year; in the western world it is between 0.7 to 1 per 1000 live births; cases of SIDS are most common between the ages of 2-4 months; the death occurs mostly at night and during sleep.

Causes of SIDS

Despite thousands of studies there has not yet been found an explanation or a cause to identify or predict when a baby is at risk. Since babies who died are no different than other babies, physiologically or immunologically, one of the theories is that it maybe due to a defect or several minor defects which are hard to trace and which under specific circumstances and during a specific period of the baby’s life, in which it is more vulnerable, create a cumulative effect causing its death.

Risk factors

• Prone sleeping position – since 1998 parents are instructed to place the baby only on his back while sleeping (side sleeping position increases the risk of SIDS two times more compared to lying on the back). Even though the cause of SIDS has not been found, preventing the positional risk factor (lying on the stomach) has led to a drastic decrease of up to 70% in death rates from SIDS. Despite the drastic decrease in the number of deaths, SIDS is still the main cause of death of infants between the ages of one month and one year.
  Researchers are sure that in order for death to occur there has to be an external trigger, or a combination of circumstances, and those are aggravated when the infant is placed on his stomach.
  In an anatomical study, Dr. Shatz and her colleagues discovered that when an infant is lying on his back – the head and neck are stretched in a straight line with the back and the airways are fully open. All arguments about the dangers of placing the baby on his back during sleep were refuted by studies: there is no danger of more vomiting, flattening of the bones of the skull or a flawed orthopedic development of the back.
  The recommendation is unambiguous: the baby should be placed only on his back!

• After eliminating the prone position as a risk factor (by placing infants on their back when asleep) it was discovered that the main risk factor today is smoking: smoking by the mother during pregnancy, and smoking around the baby after birth. Smoking can be and should be prevented around the baby, and thus the risk of SIDS can be reduced.

Many people ask why not place the baby on his stomach, for it appears that when the baby is placed on his back, there is a greater danger of suffocation from vomiting, and in the past it was customary to place babies on their stomach for fear they might suffocate from vomit. Today, due to extensive research in the western world and mainly in England and Australia, the researchers believe that the prone position is a risk factor for SIDS, but it does not reduce the danger of morbidity or mortality from other causes, including the inhalation of food into the lungs. This conclusion was reached after more than 80% of the babies found dead and who were diagnosed as SIDS cases were found lying on their stomach.

The risk of the prone position, so it was discovered, is 3 to 5 times higher than that of a non-prone position. The researchers who linked between placing an infant on his stomach and SIDS believe that this position might cause a mechanic obstruction of the airways and block the nose and mouth – leading to suffocation. In addition, when the infant is placed on his stomach he exhales carbon dioxide into the sheet, but because of the infant’s position, it does not spread and the infant inhales it back – which might endanger his life. Additional problems which may be caused by the prone position: pressure on the intervertebral artery, and over heating due to the fact that in this position the heat tends to spread less compared to a non-prone position.

Yet, when awake and supervised by an adult, it is recommended to give the baby sufficient tummy time, so he experiences varied positions and develops his motor skills.