Frequently Asked Questions - Parent to Parent

Parents share information and answer frequently asked questions about SIDS:

Emergency Room workers involved with SIDS patients and their families ask, "What can I do to make this a less stressful time for all concerned?" What suggestions do you have?

We post a Question of the Month to the SIDS List Server Discussion Area and on the SIDS Information Web Site. Responses can be emailed to us at sidsnet1-at-sids-network-dot-org or posted to the SIDS List Server Discussion Area. We will then post the responses to this page of the web site. The responses are opinions and no one person is right or wrong. We do not need to include an individual's name or any other identifying factors unless the author requests to be identified in some way or they want their email address attached.

The question for February 1998 is:

Emergency Room workers involved with SIDS patients and their families ask, "What can I do to make this a less stressful time for all concerned?" What suggestions do you have?

Responses are listed below. Please feel free to add a response by e-mailing sidsnet1-at-sids-network-dot-org. Please include the question, your response, and include in the subject line "FAQ - Parent to Parent."

I work in an emergency department that receives SIDS patients and their families and I have made an information folder that is given to the caregivers. It contains several information leaflets explaining SIDS and funeral details, it also contains leaflets explaining how to explain to siblings and how to deal with the multitude of feelings of grief, anger and guilt. We also involve counseling services via the SIDS foundation and if possible involve the psychiatric nurses for the immediate counseling in the department for the relatives and a debriefing for all the ambo's, nursing and medical staff involved in this extremely stressful event. (2/4/98)

It has been 1 month and 7 days since the death of our precious 4 month old son. One of the things that has amazed me in my constant research efforts throughout this month is the lack of compassion by emergency personnel and police involved with newly bereaved families. I feel so blessed that my family and friends with my husband and I immediately following our son's death were spared that experience. It is obvious to me that in cases where compassion was lacking that the officials involved had never had first had experience with the loss of a child. I will always be thankful that we were treated with respect and compassion in our time of loss. The people involved in our son's case were helpful, suggestive to ways to get information on SIDS, and showed much respect with the way they approached us during our vulnerable state. They all extended their personal condolences and apologized for our loss repeatedly. The medical examiner reiterated several times not to feel defensive by the nature of the questions asked and assured us that everything was strictly routine. He made sure that in no way we felt pressured or like we had been responsible for any aspect of our son's death. I wish that all families that experience the loss of an infant had such wonderful people to deal with directly after their loss. It really helped us in making arrangements and preparing for the days following our loss. I don't know that their will ever be an great way for emergency personnel to react to a family, but I think the key factor is to try to be compassionate and reach out to the family as much as possible. We in no way felt any pressure during all of the interviewing and questioning immediately after my son's death. If anything we felt they were on our side helping resolve the sudden unexplained death.

The second suggestion would be to remind people to give the family space, time, and privacy for periods of time during this process. Another thing I found helpful is to reiterate important issues during giving instructions to a newly bereaved family. We had never experienced the death of a close family member, so I was clueless in typical procedures when someone dies. It was very helpful to have two or three pamphlets and business cards with important numbers circled and highlighted. Everything was such a daze the following morning that it was beneficial to have information to look back on and numbers for those we would need to contact in the next 24-48 hours. I would have never remembered these things had they not been told to us two or three times. We were fortunate enough to have a model example of how emergency personnel should respond in such a sad situation. I hope this will serve as help for others. (2/5/98)

I appreciated the fact that I could hold my baby for as long as I wanted in the hospital..and even take him home one last time if I wished (I decided not to though)...What I was annoyed about was comments from Police (one who happened to be a neighbour of mine) as they were taking my statement..saying things like "We couldn't send So and So on this job because his wife has just had a baby ..and well..you know..."..Of course I knew..I thought..Good luck to him..At least his baby's still alive......Also when my mother turned up at the hospital and questioned what the staff thought was the cause she was told..."Don't worry..it's nothing like that..." (inferring to my murdering the child)...these things cut you when you are already feeling so god damn guilty...just small things perhaps..but it all makes a difference...I had a friend from SIDS in Bris who was shaken by the fact the police took the baby bottles from the house and told her they were checking for poisons etc...hmm... Thanks for letting me have a gripe... (2/13/98)

My case case-worker was very helpful. But ER doctor was not helped me at all. All he told me was " Your baby died of Sudden Infant Death Syndrome his heart was stopped when the paramedics were arrived your house anyway..." I could told the police or whoever asked me what happened that I killed my baby..I was the only one there in the house and I am the one who put the baby in the bed and I am the one who found baby who's not breathing... I still hope if the ER Dr. could explain what SIDS was. This is very important for the parents, because we always have a hope for our precious babies. I wish if he could told me I did all I could do but SIDS nothing we could do.. I asked my self over and over if something wrong what I did until I've attended SIDS meeting. I hope if someone could tell correct information about SIDS there so no-one could suffer about pain of questions of themselves. (2/13/98)

I lost my son on Christmas Eve. I put him to bed the night before and he was perfectly fine. The Police took his blankets, bottles and formula. They even took his diaper I had changed the night before. Their report stated my home was immaculate that the neighbors all said we were wonderful parents and they found nothing at all suspicious. The coroner called me the day after Christmas, after he performed the autopsy and said it didn't appear to be SIDS because I had stated my baby had been exposed to fifth's disease. My pediatrician stated that would not cause a baby to suddenly die after drinking 2 bottles the night before. The coroner said something made your baby die and we will be checking for drugs. The results would be in in 6 -8 weeks. I am now infuriated by this. If a mother had been breastfeeding and taking drugs or trying to poison her child, it would take 6-8 weeks to figure that OUT!!! I knew I had done absolutely nothing but the fear lingered, I could not eat, sleep or barely exist because I was afraid they thought I had done something. My suggestion is that with all the technology we have, find a much faster way to do these tests. If someone is doing something to babies we need to know immediately, and if it is SIDS at least it ends the torture and guilt of thinking you may have contributed to your precious child's death. Also if everything appears to be SIDS let the parents know, educate the coroner's and emergency personnel about the intense pain this puts mothers and fathers in. (3/1/98)

In my case the emergency room doctor was compassionate. The lady from CPS was polite also. The detective we talked to at the hospital was compassionate too. Then a few weeks later we talked to another detective who was not so pleasant. He would ask insinuating things and then ask if I would take a polygraph. I was very insulted since we had already been told that it was SIDS. I called the lady who works with the medical examiners office and provides support for SIDS families. She was shocked to hear what I had been asked and asked to do. She then called the detective and spoke to him. When she called me I back she told me that he had not even spoken to anybody at the medical examiners office. There were also three babies who had died from SIDS in my area within a couple of weeks. The detective told her that it was their policy to do polygraphs and they gave one to all the families. After her talk with him nothing more was ever said about a polygraph. I think that before people start to accuse people of such awful things they need to have all the facts first. I am sure others were harassed more but they have no right to harass parents who have already gone through way more than most people. It is plain and simple; check all the facts before making false accusations. (3/1/98)

The Emergency personnel who handled my son and us (his parents) when we arrived at the hospital were outstanding. I was taken to a separate room and told that he had indeed passed (a helicopter took him from my home to the hospital). We were allowed to stay with him and hold him for two hours. No one rushed us, we were allowed our initial and crucial first hours to grieve. There was no one in uniform giving us a hard time although I know of many circumstances where that is not true. I got to say goodbye to my son and was treated most graciously. So my response would be to let the parents have time with the child, we get so little precious time with these babies surely we deserve respect and time to hold them one last time. SO Johnson City Memorial, Johnson City Tenn., thank you for being what you should be -- kind, professional and respectful. Dr. Montieth, your tears touched me - some doctors truly care. (3/6/98)

Well, they could be subtler in the way they ask questions. When all this horror started with my daughter, I was ushered into the little room and the ER doctor and a nurse came in and asked me why there was a little blood that had come out of her nose. Even in my enormous panic and distress, I knew they were asking me if I had abused/shaken my daughter, WHICH I HAD NOT.

Now, I know they are trained to look for abuse first, but for most people who are about to learn that their dear children are dead, this has to be done in a better way. Despite the fact that I lost my daughter and her mysterious death was ruled SIDS, I feel that her care was quick, good and competent, except for this, which leaves a very bitter taste in my mouth. (3/6/98)

When ou baby died, we were treated very well by the EMT's, police officers, and ER nurses. The problem for us in the ER was that we were left alone in a crisis room with no idea what we were supposed to do. The doctor never even came to tell us that our baby had died. It was as if we were stuck out on an island and everyone was afraid to rescue us. Don't be afraid of the parents. As hard as this is on you, remember that it is their baby that died. Talk to them and keep them informed of what will happen next. (3/6/98)

Your child is dead
Course explores how to manage a pediatric death in the emergency department

This article appeared in the October 18, 1997 edition of ACEP News, the American College of Emergency Physicians newsletter. The article was supplied by Nancy Maruyama, RN, and is reprinted with permission.

Let parents hold their babies, give them time to say goodbye. Ask if they want a lock of the baby's hair. Ask if they would like the babies clothing back that they are wearing. Don't forget to give the info for future reference, like support groups, Clearinghouses for info. Pamphlets on, "What SIDS is and is not" is important. Offer to take pictures of parents with their baby if they want. But the time to say "Goodbye is the most important" Foot prints and handprints of the baby are also nice to have. (3/16/98)

Be honest and caring, don't lie to the parents and don't give false hopes. Use the appropriate words, like the baby died and be honest. The parents need to hold the child even if deceased and say good bye and don't take the child away until they are ready. Be compassionate and try very hard to be human as well. If the parents know you cry they know you are human as well. I met a mom who told me that because she saw me cry she appreciated what I did, she felt like it was a human thing. (4/7/98)

When my nephew died, the paramedics worked on him for 30 minutes before taking him to the emergency room. They did not want to remove him from the premises without his breathing. I feel they did not want the family to associate the home as being the place he died.

The police examined the place where the baby slept, as well as, took his last diaper. They mentioned to me and my dad that this was just procedure any time someone died at home, just to make sure there was no foul play. They also mentioned that their investigation did not show any foul play and they would make their report to show there was nothing to cause the death.

I wasn't at the emergency room that night, but I was called in to my boss' office the next day, just before I started working. My boss told me "If you want to see your nephew one more time before he dies, get to the hospital." She could have delivered the message in a better way. I went to work because the message we had received from the hospital was that he was breathing on his own. I lived 20 minutes from work.

When I got to the hospital, the Baby ICU Waiting Room attendant could have been a little more helpful. I inquired as to which room my nephew was in and was told I'd have to wait until 10:00 a.m. to find out. (My nephew died at 10:00 a.m.)

The nurses in Baby ICU arranged a family waiting room for my brother, sister-in-law and mother, as they had been at the hospital all night. My mom found me in the ICU Waiting area and brought me to the family waiting room. After a couple of minutes, my brother came and got me and I was able to go back. Usually only two members of the family at a time could be in with the baby. They allowed two in addition to the parents and grandparents for my nephew.

The doctor handling my nephew's case pulled my brother and sister-in-law aside and talked to them about cutting the life support since his blood pressure would not come back up. They allowed my brother and sister-in-law to be in the room when the plug was pulled, but the rest of the family was asked to wait in the family waiting room.

While the death certificate says SIDS, the doctor was not satisfied with that answer, she wanted to find out what really caused my nephew to die. She did not want to put a "Label" on the cause of death. A year later the cause was learned. However, the death Certificate still reads SIDS.

I suggest the hospital staff be honest and compassionate. I know they can't "wear their heart on their sleeve" but they can show some sensitivity to the grieving family.

I also suggest they do a follow-up of the parents a couple of days later. Just to make sure they are coping.

Provide information on where to get counseling and encourage them to talk about their baby.

After the funeral was over, my sister-in-law wound up in the emergency room. She got very listless, almost like someone who had taken lots of valium. However, she hadn't. She got to the point she couldn't hold her head up and just stared into space. We were very concerned for her and called the paramedics. They thought she was on drugs, until they learned about having just lost her first child. Then the paramedic in a nice way became harsh with my sister-in-law. Harsh in speaking until she wanted to fight back. Once she showed she wanted to live, then he talked to her calmly and took her to the emergency room. She was in a severe state of depression.

Provide information on what research has been done on SIDS. Also provide information on some funeral homes and cemeteries which offer special packages for infant funerals.

Allow the parents and family a chance to be with the baby after death, in order to say good-bye.

If they have never experienced the death of a child (their own, grandchild or niece/nephew) don't presume anything about how the family will react, and be prepared for anything. (4/14/98)

My advice to ER workers is probably best to describe as much as you can tell them about SIDS. In my experience, everyone acted like I had the plague and didn't say much of anything. Most parents do not understand what is going on at this time. They just want their baby back. So please be of assistance, we parents would appreciate it. (5/28/98)

I lost my first child when she was 3 months and 4 days old. In my experience the ER doctor was terrible although I have to say that the fire department was terrific and seemed to know more about SIDS than the hospital. Which makes me disgusted about this fact.

My husband had to fight the paramedics to ride in the ambulance with her. They were terrible to him but he did get his way and went along. Paramedics need to understand there is not a parent alive who would just let someone take their innocent child who is in critical condition out of their home and not want to be there, if anything for hope.

An officer drove my mother and I to the hospital and I have to say that he was very helpful and caring. He escorted us in to "the little room" and we waited. No one entered the room to let us know anything. Finally, they sent my husband back there to tell us she was gone. This was awful, I mean isn't that the doctors job to tell the family? Unfortunately he wouldn't even acknowledge us.

The worst thing they did was to ignore the fact that we did not understand WHY? So what do we do now? We did get to hold her and they weighed her and measured her but did not take a picture as the nurse said they were out of film.

Later, the doc came in and told my husband that the judge was ordering an autopsy and he believed there was some type of abuse. Now I understand that they must do an autopsy on babies in which the death is not obvious but to tell us that was wrong on his part. That could have been kept to the unknown, or at least until they proved us guilty. Which he was certain he would do just that. When we got the autopsy report, the judge handed it to my husband and stated, "You're really lucky" . At that point my husband wanted to punch him which I know I probably would have done if it would have been me.

When we were leaving the doctor wanted to prescribe me some nerve pills and in doing so told me I really needed to calm down. Give me a break! At the time I did not say anything because the way everyone was acting I believed we had done something to her. I think that was the worst feeling I had ever had because I believed I was guilty of something. (5/28/98)