Frequently Asked Questions - Parent to Parent

Parents share information and answer frequently asked questions about SIDS:

What advice or suggestions would you give to a parent planning their baby's service?

We post a Question of the Week 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 the week of April 20 - April 27, 1997 was:

What advice or suggestions would you give to a parent planning their baby's service?

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."

The answer to this question will depend on (a) the individuals' personal, cultural and religious beliefs, and (b) their state of mind.

I don't know how we managed it, but we arranged more-or-less everything ourselves. My memory is of a very special event with everything just as we wanted (apart from one intrusion), and I am so glad that we found the energy to do this.

I think arranging everything gave us something to do during that horrible period of shock and stunned confusion. It gave us (and especially me) some sort of purpose during a totally senseless time. You need to take control from the start, otherwise people will assume that you can't manage it, and will take over. And you need to be very clear about what you want and what you do not want. But then you also need to delegate as much as possible: don't worry about asking people to do things; it will help them as well, and they will be more than willing. You need to remember that you are very injured, and that you can't do all the things you would normally do; you need to give yourself space to be able to think as clearly as possible.

We decided we didn't want the standard religious service because our baby wouldn't have been brought up in the Christian tradition. So we contacted a humanist officient, and she helped us decide on various possibilities for the service. This included everyone throwing evergreen leaves into the grave at the end, rather than the standard "ashes to ashes, dust to dust". However, the service itself was all our own: we had a friend sing: "Dance to your Daddy", and there were readings from both of us. We also asked people to listen to a piece of music, because music often says more than words can. Everyone who attended the service was given an order of service that incorporated poetry and a colour photograph of him. The photograph helped people to focus on his life, rather than his death, because it was his life that we wanted to celebrate. (Sun, 20 Apr 1997)

Our baby's service was handled by my brother in law. He in fact took over and did everything from selecting the Home to taking us by the hand at the cemetery to find a resting place for our baby. We were not strong enough to do this on our own, in fact I know we would have faired badly if not for my brother in law. This was my first funeral.

In terms of advise I think you should do what YOU think is important. There are no rules that should preclude you from remembering your child or doing or saying what you what and how you want to do it. We put toys with our baby. His toys. We also put toys at his resting site ( hate that description ).

What you decide to do, follow your heart. It will be hard. But whatever you do your child will know you are doing your best and your son or daughter will know that you love them and they love you. that's all that matters. (Sun, 20 Apr 1997)

My nephew and his wife lost their 4 1/2 month old baby last Sept 5/96. They belong to a Ukrainian Catholic Church in Fort Saskatchewan, Alberta and had a prayer service the night before the funeral service. What made both services very beautiful was the choirs choice of music and the quality of the choir. The Priest was a very kindly man, who knew the family well and had officiated at the baby's Christening, he encouraged dialogue and open grieving amongst family and friends at both services and at times throughout both services he himself was brought to tears. I think the beautiful music and the encouraging manner from the priest has gone a long way to help these young people deal with day to day grieving the loss of their son. (Sun, 20 Apr 1997)

The first one being, don't let anyone "sell" you something that you don't feel 100% sure of. What I mean is, don't let someone tell you that the "normal" thing to do is to not have a viewing or that the service should only be a grave-side service that is very quick, because there is nothing "normal" about burying your child. Do only what makes you feel completely comfortable and what you think best honors your child's memory. I personally had a public viewing that lasted all day long. And I stayed at the funeral home until they kicked me out. Well meaning people tried to tell me that there shouldn't be a viewing and that if there was it should only be for the family. They then went on to tell me that I shouldn't stay very long at the viewing. How can someone think that a mother shouldn't be with her child until she simply can't be anymore? If you can't handle seeing your child in that state, then don't force yourself. But if you feel like you'll be okay, don't let anyone tell you otherwise. Only you know what you can do.

If you choose to have a memorial service in a church, at the funeral home, or at your own home, don't let someone put a time restriction on it (unless the facility is already "booked" for another service). Play and sing as many songs as you see fit and have the minister, friends, or yourself read as many poems, stories or scriptures as you want. There is no such thing as too long a goodbye.

At the cemetery, stay as long as you want. Don't let well meaning people drag you away because they think it will be too hard on you. Stay all day if you want. Our pastor wanted a quick service and then wanted us to leave right away. Letting him decide that was one thing I will regret forever. I wanted to stay there until they "laid her to rest." Instead, I turned around in my seat and stared at her tiny white casket through the back window until it was out of sight.

The bottom line is do what you think best honors your baby's memory and don't let anyone change your mind. (Mon, 21 Apr 1997)

Maybe it's because our anniversary is so close that I remember more things about our baby's death and service. Also, there are a few things that I didn't do that I regret. I want others to know, so they don't have the same regrets later.

I was the person who made all the arrangements for our baby's funeral. My husband was home with him and was the one who found him at 10:30 am and started CPR. I was at work, and my first son, who is now 6 was at school. When the paramedics came, they told my husband that our baby's heart was strong, but he had minimal brain activity. We had decided long ago that life support was not an option for any of us. We are both in the health profession and know what life support can do to a family. My husband signed the papers to let our baby go quietly and peacefully. Since no heroic measures were taken, his body was intact and unmarred until the autopsy. The last time I held him, just before the coroner investigator took him to the morgue, he just looked like he was sleeping peacefully.

My husband still sees the awful image of our baby when he turned him over and found him deep, dark blue and mottled. He told me the day after he died, that he did not want to go to the funeral. His feelings were that funerals were for old people who had lived a long life. He wanted to remember ihm as he was when he was alive. I on the other hand needed a funeral to put some closure to this tragedy. I know my parents, my in-laws, our family and friends needed a funeral also. I told him I was okay with him not coming to the funeral, since I know everyone grieves in different ways. I didn't care what others might think.

I picked a funeral home that was easily accessible and close to my home since I didn't know of any in particular. I was very lucky to have two of my close girlfriends (one who flew down from Oregon) help me. I had definite ideas on what I wanted, but I'm not always the most assertive person. I let them know what I wanted, and if they thought I was being pressured into something I didn't want, they spoke up for me. The funeral director was actually very nice, contrary to what most of us think. They let me do everything I wanted to do.

1. I did not want to spend too much money on a funeral. I find it appalling when people get into debt to have a funeral. I knew I was going to have my baby cremated. This is my personal belief and practice. I did not want to buy a casket. There is no law that says you must have a casket. I used his bassinet. My husband took the legs off for me. The bassinet was set on a table, and I had the bassinet skirt draped on the outside. I had his stuffed animals around the bassinet along with the flowers that had arrived. It actually looked very beautiful. He was cremated in the bassinet along with all his toys. I later thought perhaps I should have donated his toys to a needy child, but that's hindsight. The whole service cost less than $350. I did have him embalmed, but found out later that this too was not mandatory, as long as the body is refrigerated and especially if you are going to cremate. The embalming process makes the bodies look bigger and pastier. I did not have any programs printed by the funeral home. I went to a stationary store and got blank note cards. A laser printer was used to print a poem especially written for him by a friend. We passed out this card as the guests came in. This card was also used to send a "death announcement" (for lack of a better term) to friends and relatives.

2. It was of utmost importance to me to dress my baby myself. After all, he was and always will be MY baby, and I felt no one else should dress him but me. Besides, I had my little rituals that I would do before I dressed my babies. A lot of people tried to discourage me. I knew he would have incisions from the autopsy. I remembered from gross anatomy what these looked like. It did not matter, I couldn't stand the thought of strangers handling my baby. I could not stop the coroner, nor the embalmer, but the least number of strange hands to touch him was all I wanted. The coroner had actually done a good job of suturing and cleaning up. My sister and one girlfriend went with me to dress him. Every time either of my boys got a diaper change, I would slather on a thick layer of Desitin. My babies had the whitest and smoothest butts on earth! I put on a thick coating of Desitin before putting on his diaper. I took several outfits with me, but ended up using the outfit that was easiest to put on. I'm sure the people at the funeral home are not as careful with the bodies as I was with my baby. The outfit we used was the one he wore for the birth announcement picture. I did not put a hat on him. He had an incision on the back of his head, but what little hair he had covered it good enough. Since he was born during the cooler months, the outfit was long sleeved and long legged. I don't know if it's because as parents we're supposed to keep our babies warm and dry and protect them, but I made sure he had socks and shoes on, too. I take footprints of my kids every month until they're one, and then once every 6 months until three. I never got to take his 3rd month print because he died a day before 3 months. I took the footprints before dressing him. I also got several locks of his fine, short hair. I didn't take hand prints because the fingers were curled and they were starting to dry out at the tips. We then laid him down in the bassinet and arranged the skirt the way we wanted for the service. This all took only 30 minutes to do. The three of us then sat and talked while stroking him for about an hour. It was very peaceful. I wanted to but could not hold him because he was too cold, big and heavy from the embalming and refrigeration. He really did not look like my baby. The embalming has a way of distorting the facial features. The funeral home gave me as much time as I wanted. Before I started to dress him, the director came by and told me how she thought I was so brave, and what a beautiful baby he was.

3. My BIGGEST REGRET: I did not have my other son at the funeral service. I always thought I'd teach my children that death was a part of living. But I figured it would be one of the grandparents, not a baby brother who would die first. I just wanted to protect him from this harsh reality. I didn't know how much he would understand. He was 5 at the time, and was and still is not a very verbal child. I didn't want him to see his baby brother and not understand why he wasn't getting up. His only definition of death up until then was when he died while playing a video game. I now realize that by not going to the funeral, he never got to say goodbye to his brother. He saw him alive when he went to school in the morning, and by the time he came home, he was gone. He has been in therapy for 10 months now and seems to be doing better. We have used the "D" word (death) and talked about how and why he died. In the beginning, he would tell me: "Mommy, my brother died of SIDS and it happens to just boy babies." Almost a year later, he now says it happens to just babies. I know now that children accept things to a level they are capable of understanding, and it is better to give them a truthful, honest picture of life and death.

4. I took a few pictures of the bassinet and flowers to show my other son and myhusband someday. I wish that I had taken more. It is probably best to designate someone to do this job. If I hadn't taken these pictures myself, we would not have any. Some of my friends might have thought I was being morbid, but what's more important is the memory, not what others think. I didn't take any shots of my baby himself and wish I did. I also wish I had recorded the service. Some of the things the minister said was very nice and comforting, but I don't remember them now. You can always throw away pictures or recordings later, but once it's over, you can never go back and get them.

5. I brought his ashes home. We do not have a family plot yet, and I didn't want him to be all alone at the cemetery. He is on a special shelf in our living room with one of our dogs who died the year my other son was born. I will often look up at the shelf and say "hi" or "I love you". If we move, the whole family will move together. Someday, when his grandparents pass away, I may bury him near them. But for now, he lives on in my heart, and what little earthly remains there is, it's close by me.

I guess the best advice I can give any newly bereaved parent about the service is: If there is ANYTHING you want to do, no matter how big or small as long as it's reasonable and possible, DO IT. Don't get talked out of it because it's not proper, or what others will think and say. I know I've rambled on, but it has helped me a great deal to remember these things. Thanks for listening. (Mon, 21 Apr 1997)

Do what feels best for you. Try not to let other family members take this away from you. This is probably going to be the only time you will get to say "goodbye" to your precious baby and you will want it done the way YOU want, not someone else. I felt it was my moral obligation as my son's mother/father to do this for him. I didn't want anyone else to do this. We did allow my husband's parents to be there. They drove us to the funeral home and helped with our daughter (who was only 5 years old). We also felt it very necessary to have our daughter participate in the planning of her brother's funeral. She helped choose songs to be played. We kept it as "child oriented" as possible...i.e. songs like Jesus Loves Me, etc. The main thing though is to do what feels right for you and to feel free to ask for guidance from others (i.e. funeral home personnel, relatives, etc.) if you need to. Don't let them (especially relatives) tell you that you MUST do this or that...it's not their child! If they do tell you something, it may be good advice, but if not, let it go in one ear and out the other (just like when your child was born and how you should raise your child, etc.). Also, if you have surviving children, let them color pictures, write a story, for their deceased sibling. Our daughter colored some pictures for her brother and wrote a few things (mainly, "I love you") and these "went with" her brother (we didn't keep them, they were for him, not us). (Mon, 21 Apr 1997)

We planned all of our son's funeral by ourselves. Had no idea what to do! How do you pick out scriptures for your son? Somehow we got by. I think the parents should have some one who is not in a daze go with to plan the funeral.

Luckily we had a real compassionate funeral director. He asked if we wanted to hold our baby, but we felt weird about it. I wish now that I did. The funeral for him was free. They do that for infants. The only thing we had to pay for was the headstone. He was buried in the infant section. All the other infants that were buried there were still borns, or died the same day anyway. One other child was 7 days old when he died. He was the oldest. The funeral home will provide a headstone for you, but it was a plain one with just his name and dates. We wanted our own. It's the prettiest one there in that section!!! Right up front of the cemetery, so everyone who goes to the cemetery sees his grave site. (Mon, 21 Apr 1997)

My advice would be:

1. Take someone that can be an advocate for what you want with you.

2. Dress the baby yourself, or have someone close to you do it. I have found in talking to others, as well as my own experience, that this helps with the fear of what they did to your baby's body. It also helped me accept that he was dead.

3. Take pictures, and take a lock of hair, if possible. (I think that the funeral home should do this, since when grieving you might not think of this, but once the funeral is over, it is not something you can go back and do.

4. Have a funeral. (I too, have heard of funeral homes encouraging just a graveside service, in fact it was suggested to us) - to me the funeral helped with closure issues.

5. Other ideas for funeral: play lullabies in background, bring a favorite toy, blanket, etc., display pictures of your little one. (We had a photo shop print several pictures, blown up, for us overnight at no charge to display at the funeral. I was glad, because my baby looked so different after death, and several of our relatives had not yet seen him.)

6. We had a family viewing, before the funeral, and we all sat and talked about him and the wonderful things he brought to us, before the funeral. It was wonderful.

One other thought, in the hearse, on the way to the cemetery my husband and I sat in the seat where they were going to put the casket and held the casket until we got there.

***For those attending - do not take infants to the funeral. We had someone bring a baby to the funeral, it cried the whole time, my milk (I was breast feeding) started to flow and I was soaked as well as how VERY difficult it was to hear that when I had just lost my baby. (Mon, 21 Apr 1997)

We decided to release balloons at the end of our daughters service. Something we felt we could let go of and we felt that as those balloons rose they helped lift our little girl to a higher resting place. (Mon, 21 Apr 1997)

I made all the arrangements myself and learned a great deal in the process. Things like, all the people that you have to deal with are not sympathetic... it may be that they are just numb; but I still felt like I was just a number to some. The grave sight for a baby was a lot more expensive than I thought, the same with the casket and mortuary fees. The headstone was almost 200 dollars and took 2 weeks to get. We had elected to have his musical teddy bear buried with him and was told the casket would support that choice only to arrive at the grave site and hear that it wouldn't fit. That was when I realized the almost 300 dollar casket was only just big enough for my baby.

I know all this sounds like everything was negative; but there was some positive light out of the service. We found people that we had known for years that had also lost children to SIDS and they provided a lot of support. It brought family a little closer together and has strengthened our marriage. Whatever you decide to do for a service, remember that it is closure for you and your spouse... make it what you want and cherish the memories as you need to. (Mon, 21 Apr 1997)

My own experience with this is that you have to do things your own way. Don't let well meaning family and friends tell you how it should be done, or let them do everything for you to spare you the pain you are feeling. It will help bring some comfort knowing that you took care of everything. We are glad that we had an open casket since everyone was at the house the month before for her christening. I picked out the dress and bonnet that she wore as well as her shoes. She looked liked a china doll. My parents wanted me to put her in her christening gown but I refused. (it was the same gown I was christened as well as our older daughter and my daughter that I had after her my baby died.) Do your own thing!! (Wed, 23 Apr 1997)

First of all, I should mention there is a book called a "Loving Goodbye" that would be helpful to parents to help plan their baby's funeral. I did not have a copy of the pamphlet when my son died. The evening my son died, I didn't think I could do anything about a funeral. My mom offered to help. It ended up that my husband and I did all of the planning and my mom helped call people and let them know about the services. I guess I called my work and told someone the details. We had some problems, when we called our church. The main minister did not do baby funerals. We had to wait for the other minister to return from vacation to plan our services. He died on a Friday, just before 4:00 in the afternoon. The coroners did not release his body until Tuesday afternoon, just in time for the viewing. We had a small private graveside Wednesday morning with close friends and family. We had wanted to have a funeral service, but ended up having a memorial service, because the minister was out of town and we could not put the details together without the minister. The memorial service was about a week after the graveside service. My husband and I planned the memorial service. About 200 attended the service. Our church was nice enough to have a potluck of food for the people following the service.

Some suggestions I would make would be:
1. Get a lock of hair, if you can.
2. Get footprints, if you want them.
3. Make sure you get some type of bonnet, if you are having a viewing or open casket.
4. Prior to the viewing, ask if you can hold your baby. This helps a lot with the closure. And gives you one last chance to hold your baby. I was allowed to rock him in a rocking chair. This was very helpful to me.
5. Take some pictures or have a family member take pictures. Our services were taped and I have never been able to listen to the service again, but I have it, if I want too. (Wed, 23 Apr 1997)

I do not regret any decision made when I buried my baby girl. It seems to me that parents should follow their hearts on decisions about opening or not the coffin, taking pictures, accepting flower arrangements. My best advice would be that parents should do whatever they feel and not what family or friends think it's appropriate. (Thu, 24 Apr 1997)

We decided to only include those that had been involved in our baby's life.

We spent time alone with our baby just holding him and loving him.

We sang a few special songs, How Great Thou Art, This Is The Day That The LORD Has Made and Jesus Loves Me.

I could not have gotten through the day without holding our son as much as I did.

We are a military family, moving every few years so our decision to have our baby cremated was based on the fact that we do not know where we will settle after my husband retires.

We chose a lovely urn, a kneeling angel and we keep it in our bedroom.

My only regret is that I didn't dress my son at the funeral home. I missed that. (Date: Tue, 08 Jul 1997 )

No one wants to EVER think of burying their children before themselves. It was very hard. I remember feeling numb, but keeping an open mind helps significantly. It not only makes you (hopefully) feel a little better, but it also makes the other party feel like there are "participating." Try to think of giving your child the best as if they were alive... nothing more, nothing less. Do what makes YOU feel better! (7/31/97)

Planning our daughters funeral seemed automatic. I don't remember ever thinking during the time. Just feeling. I wanted it to be a celebration of her life. We had bright flowers balloons a banner that said "we love you bunches and bunches and lots and lots" that was our own little thing with our daughter. The music we picked was baby lullabies. It was very different than most funerals but I wanted it to reflect the beautiful, bright, little girl that had graced our lives with so much joy. I only regret that we buried her and didn't have her cremated. At the time the thought of cremation was to horrible to consider but now. Well its just that people don't show the kind of respect you would expect in a grave yard. Vandals and parties, poor upkeep, things I never considered. I guess my best suggestion is do what you feel in your heart, it doesn't matter what anyone thinks. Its your baby, your feelings that need to be considered. (Nov. 4, 1997)

I know this forum is for SIDS Parents, but I wanted to add my comments about the service of my nephew. He was the first child of my younger brother and his wife. He was 27 and she was 17. They were very caring and loving parents and everyone was home when my nephew was found. He had only been in bed an hour when his mother walked in to feed him and found him.

Two houses down from us was a family who owned a funeral home. The wife took my mother, brother and his wife to the hospital when the ambulance left. My father and I were left to deal with the police, as they were required to investigate any home death. My nephew was revived, as far as breathing, but nothing else responded and 13 hours after he was found, he was pronounced dead. The hospital personnel were supportive. They allowed more than two people at a time to be in with my nephew up until about an hour before the decision was made to cut life support. They allowed my sister-in-law to hold my nephew until she was ready to put him down.

The owner of the funeral home came to my family the next day and offered to let us use the home for viewing at a discounted rate. My older brother's church paid for the services and the Cemetery had a plot of land dedicated to babies called Baby Land. Any child under 24" could be buried in Baby Land and the plot would be donated to the family. So the only expenses were the services, coffin and marker.

We didn't have a church service, but there was a chapel at the cemetery which was used. My sister-in-law had a special song that she always sang to my nephew and at the service a rocking chair was set up for her. She sang the song to my nephew and then kissed him. My younger brother closed the lid and carried the coffin to the graveside.

As to advice.

1. The funeral you plan should be for you and your child so don't worry with what everyone else thinks you should do. If the advise they give does not fit with your child's personality or with the way you interacted with him or her, then don't feel that you have to use their advise.

2. If the baby had a favorite toy or book, feel free to put them in the coffin. (I was making a baby blanket for my nephew when he died he was 6 weeks of age. The baby blanket wasn't very far along and the size I had fit inside the coffin.)

3. While money is something parents should be concerned with, if you find a cemetery with a section dedicated to babies, find out if they have any discounts on the plots.

4. Get a small cedar box and put some of your child's things in, especially if it's a first or second child. As other children are born or older children grow, feel free to show them these things and talk about your other child. If you have any videos of your child, make a copy and put it in the box. (4/14/98)