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Siblings of a baby with anencephaly


Zayne and his big brother


Being a good mother to my living child while grieving was the hardest thing I ever had to do.


The diagnosis will have an impact on everyone in the family. Also, on your other children.

How can you help them?


- Announcing the diagnosis
- Include siblings in the baby's life
- After the birth
- Death
- Funeral
- Regrets
- Grief
- Children's books
- Links
- References


Announcing the diagnosis:

It is important to know that while young children may seem like they are not able to have serious conversation due to their limited ability to speak, that is not the case. A child's ability to understand what they are being told far exceeds their ability to express themselves. As such it is even more important that we make sure to explain to them what is happening. As without an explanation the child will begin to look for reasons why things suddenly have changed at home. He or she may begin to think they are the reason you seem sad or do not seem like your normal self.

When we arrived home, Cecilia, now 3 years old, asked if she could see the photo of our baby. I said, "They didn't give me one today, I'll have to get one next time I go to the doctor." She said, "Are you a bit sad, Mama?" And I replied, "Yes, our baby's a bit sick - it has a sore head.", then she gave me a cuddle.
- Teresa

My first memory of my little sister Anouk is of the visit to the gynaecologist, where my mother learned that Anouk had anencephaly and would not be able to live. I will never forget the image of our mother crying her eyes out at dinner that evening. I had never seen her in such a state and I didn't know why.

How to break the news:
- Choose a quiet location where your child feels safe
- Select a time of day when your child is not tired and is calm
- Take your time, do not rush. Make sure there is enough time for your child to process the news and ask any questions they may have.
- Use simple concrete words that are age appropriate
- Tell them the truth**

** Children have a tendency to fill in what they do not know or understand with assumptions. If a child is not told the truth or questions go unanswered they will begin to create their own version of what and why this is happening. This can cause more anxiety, fear and even guilt for a child depending on what their misconceptions are. If the child was unhappy about a sibling they may feel they somehow caused this bad thing to happen ect.

Parent's stories in italic:

We sat our 4-year-old son down with us and told him that we had something happy and sad to tell him. He was now a big brother to a baby growing in my tummy (something he had longed for), but the baby was very unwell and would die and go straight to heaven after it was born. We then answered any questions he had as they come up, honestly and in a way that he could understand, and gave lots of reassurance about it being rare for people to die before they are very old.
- J

My husband and I took all our older children with us to the mid-pregnancy ultrasound for our 5th baby. Our children were 3, 5, 7, and 9 at the time. It was supposed to be an exciting appointment where we would get to see our baby moving around on the screen! However, the technician said she saw something on the ultrasound that we would need our midwife to call us about. In the car after the appointment as we were driving home, our midwife called and we put her on speakerphone. She told us that the baby had anencephaly and that she would not be compatible with life. All the children heard this sad news right away. We didn't even have to tell them ourselves. We pulled the car over and all 6 of us just held each other and cried. We were all devastated.
- N

We found out at 16 weeks and told our girls about a month later, once we'd had time ourselves to get over the initial shock. We told them very simply that our baby was going to live in heaven, and that we might get to spend a little time with him on his way to heaven. Our younger daughter replied with "But I want him to live here with me!" Both girls were sad.
- P

We were very open with our oldest and she knew about her baby sister and that she was probably going to go to heaven. We told her that God made Hazel extra special and different and that she was made for heaven.
- B

We had a special lesson with our four daughters on Monday night. We talked with them about God and heaven and love and family and eternity. We talked about how special each of them is. We told them how glad we felt to have a new baby coming. And then we explained in simple terms what concerns we had for her. Our oldest daughter, Alyssa, cried into her father's lap. Haley, who was 5, was more prosaic. "I'm not sad, because there are two good things: we can see the baby now, and we'll see her in heaven, too." Natalie didn't quite understand, but made sad faces when we did and said, "Me, too. I'm sad, too." Celeste just wanted to play with the dolls I had used as part of the lesson.

My son was 5 when Lily was born. We explained that the baby in my belly was sick, that her head didn't grow properly. We explained that the brain tells the rest of your body what to do, tells your lungs to breathe, tells your heart to beat, and that it might work for a little while, but that she wouldn't be able to stay.
- K

For my family we decided that honesty was the best policy. We told them that Samuel's head did not grow right in my belly and that it was no one's fault. We told them that he would only be with us a short time. But we also told them
that when he leaves, he is going to heaven to get a new head and will not be coming back. We assured them that we will all be together again in heaven. I made sure to keep it age appropriate in language they could understand.
- J

We approached it based on our conversations about our son who was both with a cleft lip and palate "You know how everyone is born different, and sometimes things don't grow right when the baby is growing inside mommy - how that happened with your brother. Well, very sadly, that is what has happened with [unborn] baby sister. When she was just beginning to grow, she didn't grow a brain and so that means that as long as she is inside mommy, she will be alive, but when she is born, she may not live very long.
- Kathryn

When telling our two year old about her sister's diagnosis we chose to be very matter of fact and honest. I explained to her that "We will get to meet the baby and say goodbye. She won't get to stay with us she will go to heaven." When I was asked why she didn't get to stay I explained that "babies sometimes are sometimes made in a way that they get to stay and sometimes in a way that they cannot. Your sister is missing the top of her head." Any time she would see me crying I would explain that I was feeling sad because Luna wouldn't get to stay and I wanted her to. I would make it a point to tell her I was ok, just sad and people sometimes feel sad. We would often snuggle or hug, and I would tell her that I love her. I also made it a point to tell her how happy she made me and how grateful I was for her and her sister.
- A

A counsellor advised that we should avoid telling our children expressions like "the baby is sick" because they might fear that if they (or someone else they love) get sick they will die as well.
- M

After you have talked to your child about the diagnosis, it may be helpful to ask them to repeat back what you told them in their own words. This will give you a sense of whether they understood what you said and if you need to correct any misunderstandings (5).

He understood well. We told him that it was ok to feel happy or sad. When asked how he felt, he said that he was happy because he wanted us to have a baby, but did look sad.
- J

Our son was 4 when our daughter, Ellis, was born with anencephaly. He was also at the ultrasound when we first found out. It was good to be able to tell him at times that we were sad because the baby's head did not grow right and we likely wouldn't be able to take her home from the hospital. We assured him that his head grew right and everyone else was fine.
- T

When it comes to details start by explaining things on a simple, level then let your child guide you with the questions they ask. Some children want to know everything and others may be overwhelmed by too much information. Know that some children will ask a question multiple times, it does not indicate they do not understand it is just how young children process differently from adults who can be told something once.

We answered questions about why he couldn't live long outside Mummy's tummy and encouraged them to keep asking questions, then and in the months ahead.
- P

Let them talk, process. Don't be afraid to talk about death directly, to let them ask questions. Knowing what you believe happens after death can help navigate the very direct questions children will probably ask. And as long as you're willing to answer sometimes, it's okay to say that right now is not a good time to talk but we will later.
- Kathryn

Before answering a child's question, pause to think: Why is the child asking this question? What does he really want to know? What is his need?

If your child asks questions about the medical aspect of the diagnosis or wants to know what the baby will look like, you can show your child a few selected pictures or illustrations.

During pregnancy we tried to involve our children in as much of the process as possible of preparing for birth and death. We showed them photos from the anencephaly.info Facebook group of babies with anencephaly. We even found pictures to show the kids of what the babies look like without their hats on. We didn't want the kids to be scared when they saw our baby's head.
- N

As much as possible, try to maintain your children's daily routine (meal times, sleep times, day-care, school, etc.), as the stability of normal life can be reassuring (1).

Dealing with your child's needs while you are also dealing with your own emotions can be difficult. Ask for or accept help from family or friends, and don't hesitate to accept help from professionals: doctor, child psychiatrist, therapist, chaplain, school nurse, social worker, support group ...

Our local children's hospice provided sessions at home with a Play Specialist for our older son, which meant that he got some extra attention at a time when hospice nurses were sometimes visiting to support the baby.
- J

I was very thankful to have the support of the children's hospice in my city. They have experience with this sort of thing, and therapists and counsellors.
- K

One day I whispered to my kindergarten teacher: "My mum is expecting a baby, a girl. But she won't be able to live". Being able to share this "secret" with someone outside my family whom I trusted was like being relieved from a heavy backpack to carry.

It is hard for a child to understand the approaching death of their unborn sibling and at the same time navigate the sudden changes they notice in their parents. It is vital that children do not assume the role of consoling their parents, but that they are allowed the space to process their own feelings as concerned siblings. As such it is important to acknowledge and not ignore or try to distract your child from their emotions and feelings as they process.

To ensure the best possible support for the child, remember to notify the child's home, school or playmate parents.

We spoke with their teachers at school about a month before the birth so they were aware of our situation and could support our girls.
- P

We had to tell our kids. It was only fair to them to know what was going on. They were crushed and struggled to understand. We informed their teachers. Those teachers were a Godsend through all of this. The kids could talk freely at home and at school about losing their baby.
- Susan

We lived in full transparency of our child's condition with everyone we interacted with on a recurrent basis. In this way everyone who interacted with our daughter or myself was aware. I learned to be comfortable with my emotions and treat them as normal human behaviour. I did my best to model this as normal and healthy for my daughter. To not stigmatize feeling sad and normalize talking about it. When she would say she was sad, I would ask why. When she would say because of Luna, I would validate those feelings and say I too feel that way and that it is ok to feel sad it means that we love her.
- A


Include siblings in the baby's life:

While your child has to share in the pain of the diagnosis, you can also help him or her share in the joys that this baby brings into your life.

Our son picked up on our positivity about our new baby. We tried to make the most of his time with his brother - he came to obstetric appointments with us, we had photos taken together with the bump, and he wore a "big brother" T-shirt. His nursery were aware and supportive. As a family, we all grew in depth of faith and in our understanding of the reality of heaven.
I think being open and honest helped, and allowing the older sibling to enjoy the experience of having the new baby in the family, if only for a while.
- J

One month after diagnosis, our family decided to take a whirlwind trip to Disney World. We spent two glorious weeks together, taking our baby to amazing places and eating the more delicious food. We took lots of pictures of our "family of 7" and bought souvenirs and Christmas tree ornaments to remind us of the trip. We got a special ornament for our baby girl. It had a beautiful rose on it from Beauty and the Beast.
- N

Kyra moved constantly and she seemed to respond to us. We would talk to her and she would squirm and kick, Elijah and Isaac seemed to make her move the most! They would talk and shout at my belly, Elijah even laid his hand on my belly while we prayed for her and she kicked for him so much. They are such amazing little men and I just knew that they would be amazing big brothers; we could picture them protecting her like big brothers should! We would play music for her and lay our hands on my belly and she would respond every time.
- Jay

My 7 and 5year old nephews were told everything but in a gentler way. We explained that Shamus (our baby) was sick and there was a really good chance that he would not live very long and he would probably not come home from the hospital. But that while he was in my tummy he was alive and we would get to take him on adventures and spend lots of time with him and make memories.
- M

This was a pregnancy redefined for me. I realized that all the time we had was while Luna was in utero. So we made it a point to enjoy everything we could. I wouldn't get to dress her up but I could dress up my Luna bump. She wouldn't get to be present for life outside of the womb but she could be present for life while in the womb. This perspective was a new way of living instead of focusing on how we wouldn't get an experience we tried to find a way to have that experience anyways. We stopped putting off things we wanted to go do and started living life as if we didn't have a tomorrow. As such our daughter was able to experience more family outings, do more activities and I made it a point to do things that I otherwise may have not. The emphasis was living in the now, and not letting the future rob us. It felt robotic at first but it gave way to a deep feeling joy and gratitude. Seemingly small things become filled with joy like precious gold, gold that has been refined in the fires of grief.
- A

To make the baby more real to your children, you can show them the ultrasound pictures, let them feel the baby's kicks, include them in the preparations for the birth and create memories together.

I was given a matching mother-daughter bracelet set for me and the baby. My older girls and I made bracelets in the same-coloured beads for all of them too, so that we could all match the baby.
- N

We had started when I was pregnant, with Mia, 'your little sister is going to heaven: you know we're very lucky to get an angel in our family. Not every family gets an angel'. So she took it all in her stride. When I was pregnant, we'd do various things, things like finger painting all over my tummy in this Jackson Pollock abstract artwork. She always accepted that Talia was going to heaven.
- G (10)

During the pregnancy, they helped me prepare for their brother's arrival by picking out soft toys for him, helping me practice closeups with my camera, and giving him lots of kisses.
- P

Annabelle sang to her, rubbed my belly, told her over and over how much she loved her and was happy to be her sister.
- L

Luna's sister

I took bubble baths with her allowing her to pour water on my belly or wash it. I allowed her to put make up on me and my belly for Luna. We took a trip to San Diego went to the zoo ate all the best foods. If the baby was kicking have her feel it. Allowing her to kiss, hug and talk to my belly. My daughter was able to experience a very fun and joy filled pregnancy where she interacted with her sister daily despite the diagnosis. We have pictures and videos of all of it, and someday when she is older she will be able to revisit our time with Luna.
- A

Even her brothers and sisters were able to enjoy her while inside me. They sang her songs, they read to her, talked to her and even gave her hugs. They even painted my tummy like a pumpkin at Halloween so that she could celebrate too.
- Tammy

At 32 weeks our church offered to give us a Baby Prayer shower. We were just showered with hugs and kind words. Our kids ran around like crazy people after the service enjoying the extra, well-deserved attention. Not only did we need this, but our kids needed it too. They were able to tell people what was wrong with Austin and how it felt from their point of view. Finally, an appropriate moment for them to talk about their brother with others!
- April

Austin with his siblings

I made sure to involve them in all the things we did together; maternity pictures and such.
- J

We made tie-dyed shirt for both Luke and Lucy to match. Luke painted a gallant sunflower on my big round belly, and life was just so beautiful with her growing and moving within me.
- Ruth

My youngest nephew would come and lay his head against my tummy and say 'hi Shamus' and Shamus would kick him. They definitely bonded. It was great.
- M

Take the time to capture these memories, and stories in a memory booklet that will help the child create "his" story with the baby, to support him in his emotions. You can add photos, drawings, etc. As the child grows, they will be able to return to this story of their little sibling and it will help them understand their grief as they age.

I explained to our 4-year-old that Molly could now hear us and that he could talk to her if he wanted to. He asked if he could take his kazoo toy and started leaning on my belly with his kazoo, singing to his little sister! Then he asked if he could sing her a lullaby. He sang a song that I have been singing to him since he was a baby and that my dad used to sing to me. After he finished, he leaned back in and said, "Good night, Molly. I love you. Sweet dreams!" My husband and I told him that he was already a great big brother. The more I saw him wanting to connect with Molly that night, the more I thought that no matter what the outcome, and even though it might make things a little more difficult for him when Molly died, being able to have a relationship with her at that time, even in utero, would be special and important to both of them.
- K (2)

We have tried to include the kids in the pregnancy as much as possible. One thing we do every pregnancy, which may seem odd, is to allow the kids to color my big belly with washable magic markers. The boys loved participating in this activity as much as their big sister, and by doing this, I felt like we were sharing the joy of new life with them. Gemma loved her "paintings" and often moved around a lot!
- C (2)

I was 7 years old and had a younger brother and sister when Anouk came into our lives. I remember one evening in the summer, when I helped my dad to build the little light blue coffin for the unborn Anouk. Would I have had the strength to do that when I was older? I admire my father who built this little house himself and took me with him to make it. I think it was such an important act in the grieving process that I was going through, without realising it.

Find more suggestions in our special page about bonding.


After the birth:

Recent research has shown that it is important for children to be able to meet their new sibling at birth, to have an opportunity to show affection and form an attachment with the baby even if the baby is near to or has already passed away. Children, regardless of age, benefit by being involved and supported, in all stages of their loved ones' death as a part of the family unit. This is how we can give them the best chance at understanding and dealing with their loss. When a child is present with their family to experience the last moments together, this experience helps them understand and grieve with the family. (7) As such it is vital to offer your child a chance to meet there sibling, to help them say goodbye.

Tips for when your children meet:
- Make sure to have someone capturing these moments in photograph and or video **
- Children like to be included so ask for their help with small tasks
- If a child is older offer to let them take pictures
- Any special activities offer a chance for them to participate ( ie singing happy birthday, giving the baby a stuffed animal a letter or drawing).
- Arrange for someone you trust to take care of the child while you are focused on the baby.
- Offer opportunities but allow the child to withdraw if they so choose.

** Importance of pictures and video images: Photos are important, especially for children who are still small. They will help a child to remember the baby as they grow older.

At the conference with the NICU doctor he recommended with no uncertainty that we should allow our 4-year-old to meet his sister (live or not). He warned us that he might not pay much attention, but it was good for him to have the option to hold her or not. When he met her (with her hat on) he said she was the cutest baby in the whole wide world. He picked up on the love in the room and it was the best feeling having our family of four together.
- T

Abby with her siblings

After baby's birth, I was tucked into bed and the older children all took many turns to hold their sister. Baby Abby lived for 57 minutes and was held the entire time by loving family. Our youngest was 4, and he asked to see her head without the hat, so we showed him. He was not scared. It seemed like the more information the children had about her condition, the better they handled it. As a family, we dressed the baby, kissed her, sang to her, wrapped her in blankets. We had a hard time deciding on a name, and as we held our baby girl, we finally decided on Abby Rose. It was the perfect name.
- N

Our kids came and were excited to be meeting their new brother. They didn't notice his imperfections. They smiled and giggled and loved holding him.
- Kaitlin

Book for Valena

I just had my 4 other kids choose their favorite books to bring to the hospital. They read the books to/with her, and then I put her footprints and a little note in each one about how this book was chosen by ______ to read to their baby sister on the day she was born. My kids LOVE their special books now.

When Samuel was born, he lived for 3.5 hours and my kids were able to be there to meet him. It was the greatest joy of my life to have my family whole at that time. I know they will have many more questions in the future, but, as it stands now, my kids look back with joy at their time with Samuel.
- J

One detail that I never want to forget is how the whole pregnancy, Jack called Luke "baby Luke," but as he said goodbye, he called him "my brother Luke."
- Whitney

Shortly after the birth, my brother, sister and I were able to quickly visit Anouk and our parents in the hospital. When I arrived at the hospital room, I heard screams that scared me (it must have been a woman giving birth in another room). The delivery room was not very warm and my mum was in a hospital gown on a big seat. To tell the truth, I didn't feel comfortable in that room, I didn't recognise anything. There was Anouk in Mum's arms, with a little cap on her head. Her umbilical cord had not yet been removed; it intrigued and disgusted me and I didn't dare touch my little sister, something I blamed myself for a long time. That was the only time I saw Anouk.
Even though I was shocked and uncomfortable during that visit to the hospital, I will never regret having experienced that moment! I got to meet my little sister alive! What would it have been like if I had never been able to see her?

Our daughter was almost 3 when Anouk was born. She came with her older siblings to the hospital to meet her little sister. She was a little intimidated by the unusual environment, she did not dare to take Anouk in her arms. But she did caress her feet for a while. Over the next year, she told us every day about the time she caressed Anouk's feet. She would tell everyone about it with pride.
- Monika

He was initially very cautious, seeming worried about harming the baby. We were fortunate to have 4 weeks with our baby after birth, which allowed our older son to warm up and become more confident to touch and hold him.
- J

Lucy with her brother

When Jeremy was born, we were grateful to have him with us for 18 hours before he died. The girls were able to come into hospital with their grandparents to meet him as well as spend time with him when we came home. They were able to hold him, kiss him, give him his soft toys and read to him. After he died, they were able to say good bye to him.
- P

We got to the hospital butterfly suite where our 2 other children Harry and Sophia, my stepmum and Daniel's mum was waiting to meet their sister and granddaughter. The hospice team came in with other professionals to help us make memories of our baby.
- Georgie

My kids came in to see their sister, but since it was the middle of the night, they were real groggy. Only my 10-yr. old son, James, held Joyann. My daughter Jade was very groggy and disoriented, but I got Bill to bring her to me on the bed while I was holding Joyann. Jade finally looked at baby Joyann and started touching Joyann's beautiful feet and hands and I motioned for my son, Jason, to take a picture of her, since if I said anything, Jade would stop what she was doing. I have some precious pictures of Jade touching her little sister. The next morning Jade couldn't remember seeing Joyann, so the pics will help. Jade said the next day, "Mommy, baby Joyann is not in your tummy anymore because she didn't kick." Then later on she asked where her baby Joyann is. I asked her, "Where did mommy tell you she is?" She pointed up to the roof and said, "Heaven." I said, "Yeah, that's right."
- Jewell

It is incredibly common to be nervous about how your child will react to their siblings appearance? It is important to remember children often do not view the world as we do.

A couple hours passed and then the boys were on their way to come and meet their baby sister! Children don't see the imperfections or differences that we as adults can see and so we knew they wouldn't really notice her colour and Kyra had a bonnet on so they wouldn't be able to see that part either. They had instant love for her and I loved how they looked at her! Elijah just smiled at Kyra, he wanted to hold and touch her. Isaac just wanted to play with her and kept saying in an excited voice "baby, baby". We had explained to Elijah before she was born that she could only be with us for a short while and that she was going to go live with Jesus. He seemed to understand but still asked "mommy can she come home with us?"
- Jay

Charlotte met her siblings - our 4 year old was priceless, "Oooh she's SO cute!!!!!" Our 6 yr. old took a while to get used to her, but fortunately we had enough time for her to fall in love with her sister before she died. Elijah, just 17 months old at the time, didn't seem to even notice there was a new baby in the room!
- Teresa

As we had some time after birth with our baby, we were able to bring him home and create memories together, for example making art with handprints, taking both boys to the park, to church and to a picnic. After the initial few days with us, we mostly kept our older son in his usual nursery routine three days a week (he had had enough of the constant stream of visitors at home!).
- J

At about 1 a.m. our family brought my two older girls to meet their brother (the doctor thought that morning may be too late for a good visual experience with the kids). What a beautiful memory and my favourite part of Austin's birth. The innocence of our girls was breath-taking. They held him, kissed him and loved him wholeheartedly and unconditionally. The feeling I had watching my girls with their new brother was everything I could have hoped for him and more. I didn't want their time with him to end but the lack of sleep got to me and by 3 a.m., it was time for them to say goodbye to their brother.
- April

Emmanuel with his siblings

Our older kids were very excited to have him home, but it was deceiving as they didn't think he was supposed to come home. We spent our time snuggling and taking pictures. That night I slept with him next to me. I woke up to every little noise he made. The following morning, our kids ran into the room with smiles on their faces excited to kiss and hug their baby brother.
- Kaitlin

Around 6:30am Luke woke up and came up into the small hospital bed and snuggled with us and we both were drifting in and out of sleep. He kept waking up and stroking her arm or her hair. Then around 7:30, the nurse came in and I had to go the bathroom. Luke asked to hold Lucy and of course I said "YES." I placed her so gently into his precious arms and as I walked to the bathroom, I could hear him talking softly to her. I came back out and to see him sitting there with her, oh my heart was melting with love.
- Ruth

However, they may also need help managing their emotions. It's okay to be sad or cry, and it's also okay to play and laugh. It's normal for feelings to get mixed up in their heads without them necessarily being able to understand or control it. Reassure them that Mom and Dad also sometimes cry because everyone is sad that baby can't stay. We go through this together as a family (2).

Caoimhe came in to meet her brother. At first, she was a little wary but after she got her present of Lego from him and she gave him a card she had made and a little book she began to play with him. She took his little hand in hers and said 'pleased to meet you'. She commented that he was blowing bubbles and every few minutes she'd say 'that's Eoin'. She spent the afternoon with us, in and out of the room, up on the bed and pointing out his hands and feet. At one stage she squeezed his foot a little too hard and he arched his back in response.
- Jennie



It is important to explain what it means to be dead because the child may not know it yet. In this way, you are helping the child understand that now that the baby has died, his or her body has stopped functioning and unfortunately cannot come back. Younger children do not understand that death is permanent and may expect baby to come back from heaven. We can gently explain that baby can't come back because his body has stopped working (4).

We had his funeral on Wednesday, April 17th and a luncheon to follow. We were able to see him one last time and place some special keepsakes in his casket. Our kids were excited to see him and kiss his cheeks one last time. I was relieved that they didn't notice he didn't look the same. I thought they could understand that he was gone and this was our final goodbye but a few hours later, when we were leaving the church, they were very concerned that we were leaving the baby behind and wanted us to go get him. There is really no easy way to explain to your other children that their baby brother is gone forever.
- Kaitlin

It's important to use the word "death" and avoid saying things like "baby is going to sleep" because the child may be afraid that the same thing will happen to him.
It's not too late for the siblings to meet the baby, even after death.

On Friday night we had his body at home and our families came over for a short time to say good bye. I was worried how this would affect Cecilia and Sebastian, but it was really great for them. The times they saw him in the hospital were too short, and with too many distractions. We have some beautiful video footage of Sebbie vigorously rocking Benedict in the cradle saying, "Baby, baby, baby!" (Bay-beee, bay-beee, bay-beee). Cecilia sang to him in the morning, and made sure he had his teddies with him. She looks after his teddies now.
- Teresa

So, we had plenty of time with Charlotte after she died. We all had lots more holds. Mark and I slept with her between us on Saturday night. On Sunday morning Cecilia and Sebastian and I bathed her, while Mark videoed. They enjoyed washing her little hands and toes etc. And after we dried her, they wanted to put powder on her and enjoyed rubbing it on her tummy. Cecilia put her fresh nappy on, and helped me dress her in a tiny little white broidery anglaise dress.
- Teresa

Charlotte with her siblings

Right after delivery he met his sister and was in awe... He said "she went up, she is home" and melted my heart. He saw her hand and nose and mouth and ears then he pointed out the booboo on her head but didn't see anything wrong with her.
- Samantha

The girls were full of quiet wonder, and love for their baby. "She's beautiful! She's so tiny! Look at her feet! Feel how soft her skin is! What color are her eyes? She's a little princess!" They said all the things every big sister says about a new baby. They loved her. Each girl had a turn to hold her. They were gentle, and they smiled at her. Their faces were glowing as they looked up at us with Julie in their arms. This was their sister. But we could see sadness, too. Now they understood death. They knew that Julie really wasn't coming home. It was easy to see their feelings on their faces: love, happiness, sadness, confusion, and understanding. Mostly love.
Celeste, who was not quite two years old, didn't understand much. But she could feel the emotion in the air. She was not exclusively focused on Julie, but she did know that everyone else was. She would explore for a minute, then come back and look at Julie and say, "Baby sleeping." For several days after that she would ask where the baby was, and then answer herself by saying, "Baby Julie sleeping."
- Bridget

Blake met Jack at the front door and spent a few minutes with him, showing him pictures of what Luke looked like so Jack knew what to expect. Jack was a little confused, scared and unsure about Luke at first and was more interested in exploring the room a bit than seeing Luke. But eventually Jack warmed up and wanted to see Luke. Just like us, Jack loved Luke's toes and fingers. We spent about an hour and a half together as a family and ended by reading "Wherever You Are, My Love Will Find You" - which will forever be our "Luke book" - and giving both Luke and Jack matching blankets that I had crocheted and the stuffed tigers that Jack picked out. It felt so short, but in hindsight, an hour and a half in that tiny room was the perfect amount of time for Jack. At first, I was a little sad that Jack didn't show as much interest in Luke as I had imagined he would, but then I realized that even if Luke were living, Jack's reaction was pretty standard for a 3-year-old. Jack didn't fully understand what was going on and still doesn't, but as long as meeting Luke was a positive experience for him - which it was - that's what mattered and what he will remember.
- Whitney

Here are 4 essential things to say to a child who has just lost a loved one:
- He needs to know the truth.
- He needs to know that he is not responsible for the baby's death. The baby was formed this way on their own nothing he did, thought or said caused this to happen.
- Neither he nor the parents nor his siblings are in danger of dying.
- He needs to be assured that you all will continue to love and remember the baby as you carry their memory forward.
All of these points are for reassuring your child and should be repeated several times (7).

Once the baby was gone, we didn't quite know what to do with ourselves. It felt like a whirlwind experience. Birth was quick, our time with her was short, and then she was just gone. We all cried quite a lot and held each other.
- N

One thing that was important to us was that Abby's organs be donated if possible. After birth, we had 5 hours with her body and then the organ donation organization came to pick her up. Our children and my husband took the baby out to hand her off, and our oldest daughter carried her tiny baby sister out of the house. It was a special moment for the oldest sibling to be able to carry her sister out and hand her to the people.
- N



Living the key moments of mourning as a family, surrounded by loved ones, is essential for the child. Funerals, burials or cremations are part of this. We may think that keeping the child away from the funeral will protect the child, but this tends to isolate him (1).

My father-in-law then carried the small white coffin to the grave, the bells rang as at other funerals, my father as pastor spoke a few words and we sang a previously chosen song. Meanwhile, the girls were taking their nap, for which they later reproached us.
- R

You can include the child in the preparations by suggesting for example that they decorate the coffin together, decorate a candle together, put something in the coffin/grave, be active during the ceremony by placing flowers or lighting candles, ...
On the page Youth and funerals you can find a very helpful video and e-book that will make you aware of things and information that may help your child.

We had a small funeral just for family at our home, and the girls were able to take part. They helped to make a paper chain with all the things we loved about Jeremy, and they drew posters and wrote little poems for him.
- P

We put lots of things in the coffin with him: a rabbit toy, 1/2 of a Mizpah coin (I wear the other 1/2), rosary beads, a miraculous medal (which had been pinned on his blanket at baptism), a guardian angel pin and letter from his Godmother, a drawing from Cecilia, a lock of hair from Cecilia, Sebastian, Mark and I, and he was snuggled up in a cozy red polar fleece blanket I made for him.
- Teresa

Meanwhile, Alyssa, Haley and Natalie got busy making gifts for Julie. They each made a necklace from tiny pale beads and pewter charms to give to her, as well as one to keep. They were so happy as they worked, and talked about Julie in loving words. Each wanted to do her best for her baby sister. Haley also drew and coloured a picture of a butterfly, her own favourite animal, which she hoped Julie would like. Natalie drew two pictures: one of Julie as a princess, and one of Julie as a big girl. Each girl in her own way was anxious to express as much love for Julie as she could. They loved her.
- Bridget

Tips for preparing your child for burial or funeral rituals:
- Explain to your child ahead of time what the ritual, funeral or celebration of life is. That it is an opportunity to say goodbye and share memories of the baby.
- Prepare them for people to be sad.
- Offer for your child to participate in any funeral activities, but as always this should be voluntary in nature allowing the child to stop or opt out at any point in the process.
- A child can participate by simply observing if that is their preference.
- It may be especially meaningful to allow the child to visit the funeral home or church prior to the service. So they can spend a quiet moment in front of the casket. It provides an opportunity to talk to the baby or share any last minute messages or memories.
- Remember to not limit your child or rush them, and take the time to answer any questions they may have even if they ask the same question over and over again (3).
- It is wise to have another adult who the child is comfortable with, who can help support and comfort the child. Someone who is not directly affected by the loss (maybe a teacher or close friend of the family, or an aunt or uncle). You will need to consider that you will be wanting to experience and navigate your own grief, having someone that can support your child if the need should arise allows you more freedom to do so.

We live next door to the churchyard where our son is now buried, so [during the pregnancy] occasionally I took the girls for walks there so it wouldn't be an unfamiliar place for them.
- P

We discussed the funeral (or "thank you service" as we called it with him) plans with our older son, including that our baby's body would be "turned into soft powdery ashes for us to keep to help us remember him", so that he knew what to expect and felt involved. Several of his nursery teachers came to the funeral service.
- J

One week later, we had a small graveside service at the cemetery. We have a lot of friends who also have young children, and they all brought their children to the service. There were 32 children in attendance—more children than adults! This was a tremendous support for our children. All their friends came to the funeral—what love they showed by attending!
At the end of the service, we requested that the casket be lowered into the hole in the ground. I believe this was also very helpful to our children in understanding what happens in a cemetery and where their sister's body was. It gave us all a lot of closure to see the casket being lowered.
- N

We planned to bring small groups of family up to the funeral home to meet and hold Julie that evening. The girls would get to hold her again, and give her their gifts. What a sacred evening that was.
- Bridget

Then yesterday Jade came up to me and said, "Where's my baby Joyann? I didn't get to love and kiss her." Then today Jade said she never got to change Joyann's diaper, so if things work out, Jade can put a diaper on Joyann in the mortuary Monday. We're going in with our kids and the 2 grandmas (on my mom's b-day) to dress Joyann for burial.
- Jewell

Natalie began having a bit of a hard time just then, so I stood and carried her to the back of the room. I swayed with her and spoke softly to her. It had been an overwhelming week for all of us. The congregation began to sing, "I Am a Child of God," and I walked back to my seat with Natty in my arms, singing softly to her and encouraging her to sing along. She stayed in my lap as my Dad stood up to offer the invocation. Natalie got down from my lap, content to be beside me – until Celeste wanted in my lap. It was a bit of a struggle to keep both little girls happy and relatively quiet, but we managed without causing any scenes. I was glad to have my sisters and mom nearby to help occupy little hands, and to comfort them, too.
- Bridget



My delivery was very chaotic and stressful because the quads were born 4 months early. Angel weighed 15 oz and stayed with us 2.5 hours. I was so afraid that Annabelle would be overwhelmed that we didn't let her come to the hospital to see Angel. And my husband was afraid she was too young to handle the funeral, so a close friend stayed at our house with her. Those two things are my BIGGEST regrets in life. Annabelle (even now at 5) loves her sister and is/has been very angry that she never got to hold her sister, or touch her sister. Angry that she didn't get to say goodbye. She feels so incomplete because of the decisions we made to keep her away. If I could give you any advice, your children are so much stronger than you could ever imagine. Include them in everything. Let them see the baby. They won't see anything but a sibling they love. And let them say goodbye.
- L

I honestly don't have any regrets-she loved her sister and when she was born, she held her and loved her and we still talk about her almost three years later. She did grieve and it was hard but she also loved her so much and I wouldn't have wanted her to miss out on that.
- B

As long as I walk this earth, I will regret not bringing Timothy to meet his brother when he was alive, not letting him hold him. ... I didn't know if it would be more painful or confusing to Timothy to meet his brother. But that decision caused Timothy great sorrow … and I'm so sorry for it. Not meeting his brother and holding him was very hard for Timothy and he talked about it for a long time. (12)

I can say that I have 4 regrets: not bringing my youngest child there to meet him and take a photo with him (she was 1 1/2 at the time and it was 1 a.m.); not allowing our nieces and nephews (Austin's cousins) to meet and hold him. Not only would that have been closure for them, but our kids love to talk about him and it would have given our children the opportunity to show him off to people they could relate to and who loved Austin equally.
- April

In the spring of this year, shortly before her 12th birthday, our daughter Raphaela said, "I have a birthday wish that you can't fulfil for me anyway. A photo of Elias."
- Renate

Even though we had originally planned on having our older three kids come and meet him, after he was born, we decided that it wasn't a good idea. I regret that they never saw him. I wonder if somehow, we could have swaddled him in such a way as to hide most of his blemishes so that they would have some memories of him.
- Jenn

The funeral home picked Emmanuel up before we told our kids. I didn't want their last memories of him to be of his lifeless body. We decided to take the kids somewhere fun so that we didn't end the day on such a sad note and as we were getting ready to leave the kids all said, "But we can't forget the baby! Where is he?" After explaining what happened to them, our daughter who was three at the time showed her emotions the most that evening. She mentioned several times that she was not able to say goodbye to him. I was regretting my decision not allowing them to see him one last time.



For a long time they sat there and had a hard time,
but they had it hard together,
and that was a comfort.
It still wasn't easy.
Astrid Lindgren

Children live in the present, so moments of great sadness can follow joyful play. Children, especially young children, lack the words and ability to ask the questions they have. As such they often have a lack of information surrounding their siblings death, which can cause a deep uncertainty. Therefore, they depend on adults to help provide essential information, and to engage them in processing their grief. Also keep in mind children express their grief and feelings less through language than through nonverbal expressions. (13)

Each person deals with grief in a unique way. Your child may have his or her own way of expressing emotions (games, drawing, sports, music, etc.).

Leila, baby with anencephaly

JJ did great and seemed to understand our sadness and Joy. He gently touched her face and we gave her a name sign. L-A-L-A hand spelled for Leila. He got it and kissed her face. Aaron knew that she would go to heaven, but seems to be waiting for her to come back, now that God has fixed her head. He has accepted it pretty well though. It's hard to explain forever... to a four-year-old. Isaiah just wanted to be held and passed around, we'll tell him the story someday. Laryssa cried with us and held her sister and needed to be hugged.
- LeeAnne

What is important to support your child is to cultivate open communication about the baby and death. Your child needs to know that he can always come to you to talk about baby and his feelings, that no question is off limits or feeling too big to talk about. Reassure them what they are experiencing is normal and ok to talk about.

After the grave side service my husband and the boys and I had our quite time at the grave site and Nathan who was 5 years old was looking really sad but not sure what to do with his feelings. I talked with him and told him that his little sister was with Jesus and that it was OK to feel sad and to cry about that. He hugged me and cried we talked about how she wasn't able to live here on earth with us and that someday we will see her again in heaven.
- Rachel

Leo deeply touched his six-year-old sister Eliana. She frequently fantasized about teaching her brother to walk and feeding him. Then, she would pause and say something like, "Oh, wait, he's not coming home. He is going to Heaven." The day after Leo was born into Heaven, she went to school, and her teacher's aide asked her how she was doing. Eliana answered with, "My brother is in Heaven." The teacher's aide immediately comforted her and told her that she would see Leo again. Eliana asked how she would recognize him in Heaven. "Jesus," she answered, "He will help you find your brother."
- Jacqueline

Listening carefully is essential to detecting your child's individual needs. With the right support, most children will not need professional help.

Our daughters talk about Julie every once in a while. They each remember and love their sister. Alyssa and Haley talk about what they remember, and ask questions about God and family and eternity. Alyssa has mentioned Julie at school once or twice. She wants to share her experience, wants her teacher and her friends to feel what she feels. Haley is more private, like her daddy. She doesn't want others to examine her personal, special feelings. Natalie sometimes imagines what Julie is doing now, or what she would be doing if she was here with us. She always remembers that we'll see Julie in Heaven. When Celeste sees Julie's picture on the mantle, she says, "There baby Julie! I hold Julie. Daddy hold Julie. Mommy hold Julie."
Several weeks after the funeral, Celeste climbed into my lap at the computer and asked to see Julie. "Where is Julie?" She sounded puzzled, as though she was just then realizing that there was a gap. We looked at the digital pictures, particularly the one showing Celeste holding the baby. "I hold Julie now," she said and put her hands out, waiting for me to deposit Julie in them. I hugged her close, knowing she didn't really understand. "Julie died, sweetheart. But, see, there she is in the picture." Celeste turned and looked. "We love Julie, don't we?" I asked. "Yeah," she said. "Baby Julie. Look! There her feet! They peeking!" Maybe she understands more than she can express.
- Bridget

Keep in mind: a child's behaviour may be their way of communicating with you what they are experiencing emotionally. A change in your child's behaviour (changes in sleep, aggressivity, fears, physical symptoms, social withdrawal, changes in school performance,...) might be how they are expressing their grief.

Grieving children need physical contact. When walking to the grave, holding their hand can be very comforting for your child. During conversations, when crying, when looking at picture books together, physical contact, something as simple as sitting on your lap, gives your child a feeling of security and belonging.

Children grieve "in cycles". They may grieve intensely for a few moments, then abruptly switch to seemingly carefree play, this is normal (6).

Last year, there was a situation every week when she suddenly started crying because she was missing her big brother. She could be having fun, laughing, being with others, or alone in her room... and suddenly she started crying.
- L

Finally, there is little three-year-old Joel, who swears that Leo is in his tummy every time he has a tummy ache. Often, he will ask me, "Mommy, where's Leo?" I tell him in Heaven. He points up to the ceiling and says in a pouty way, "I want him here, in my house." On those days, I pull down Leo's picture from the shelf so that he can take a close look. He will sit and stare at the picture for a few minutes and then return it to me when he is done to put back on the shelf. A few weeks ago, Joel was in one of those moods, wanting to see his brother Leo. I pulled down the picture for him. Before I knew it, Eliana had joined him playing with their toys in front of the picture for Leo to see. Then they started running through the kitchen and living room pretending to be racing cars. Before I could tell them to cut it out, I heard Elias shout, "Leo won the race!"
- Jacqueline

Show them that they do not have to face their grief alone, that as part of the family and as loved ones you form a grieving community. If a child can observe others grieving for example shedding tears, it makes it easier for the child to then express and cope with their own grief. Be honest with the child and don't say "it's okay" when it's not.

As a child who does not have the same understanding of death as an adult, I was able to mourn Anouk surrounded by my parents, my brother and my sister. I participated in the construction of the coffin; I was present at the funeral; I saw that same little coffin being lowered into the ground; with my mother we regularly visited Anouk's decorated grave at the cemetery.
As a teenager, I had to mourn again. The guilt of not having touched Anouk in the delivery room, because I found the umbilical cord "disgusting", haunted me. If only I could have gone back in time to touch and caress her! I was able to confide this guilt much later to my mother, which helped me to find peace in my heart.

I think one of the hardest things for them during that time was seeing how sad the adults around them were (especially their grandparents). Both girls were a little unsettled for a few months after their brother's death, the eldest waking up during the nights, and the youngest not wanting to be left at school. The eldest understood more at the time, and asked questions in the following months. The youngest didn't really understand what was happening and retained more of a feeling of sadness.
- P

In the weeks following their passing, Timothy drew pictures of his sisters (stick figures with really big heads!). He would sometimes give me a picture when he saw me crying… to "make me feel better."
- Kelly (12)

We talked openly about her diagnosed, embraced her life while present during my pregnancy and have integrated her into our life afterwards through our beliefs in the saints. On All Saints Day we include asking her to pray for us.
- Kathryn

Meeting other grieving children can help them realize they are not alone.

In the months following baby's birth and death, the children attended grief counselling with a counsellor specifically trained to help children. The younger three children didn't feel the need to go back after one session, but our oldest went back several times for more counselling. It was very difficult for her to process. She was so looking forward to helping to care for the baby and instead, we had to bury the baby.
- N

Reassure them that they are loved and will be cared for, even if the bereavement is difficult for the family.

Time doesn't heal, but healing takes time. As children grow in age and maturity, their grief will change.

I still remember the day my sister Anouk was born, but I remember more that we children had to go to my best friend's house, who wasn't home that day, that I played with a rabbit, than I do about the hospital or seeing Anouk. I remember the colour and size of the coffin, the moustache of my dad that day, but I don't remember being sad. I also remember very well the cemetery where Anouk was buried, but in my childhood memories I see the flowers, the fountains, the tuyas and the wooden cross that my dad built for Anouk's grave.

At the time that I am writing this, one year postpartum, our oldest daughter still struggles with grief. She is now 11 years old, and she occasionally has outbursts of anger or sadness of missing the baby. We plan to have her see a counsellor regularly for a while. Not only is her body going to be going through a lot of changes with puberty on the horizon, but now her heart has to process the grief that never goes away. It does seem to really help when she is able to talk to a counsellor about her feelings.
- N

We still celebrate Jeremy's birthday each year with a special cake, and we've answered many more questions as the girls have grown up and understood more.
- P

Cayla's big sister wrote this song for her:

Things to do together:
- The memory booklet that you started together during the pregnancy can be a support in your discussions. You can now choose photos to add to it.

The photos of Anouk, which my parents made and pasted in our albums, and the footprints of her little feet, made and kept by my mother, are anchored in my memory and have allowed me to keep a positive, soft, joyful and concrete memory of my little sister. Anouk is part of the family and of my brothers and sisters, even if she is no longer physically with us!

- Draw a "family tree" with all the family members (grandparents, parents, yourself, brothers and sisters, baby).
- Actions such as lighting a candle every day can help create a place for the deceased baby in the family.

We will put pictures on the wall of the family holding Leila, so the kids will remember their baby sister. And we will speak of Leila's Journey of Love.
- LeeAnne

Make a "Grief box": choose a pretty box with a lid that you can keep in your room. Every time you find a souvenir of your baby, put it in the box: a photo, a necklace, a toy, ... You can also put in a little note that you want to say to him, a postcard, ... (9)

For many days my daughter liked to go through our box of tangible things (photos, momentos) and that was hard for me but it helped her.
- Kathryn

The mourning diary: it is for those who like to write. You can write about your days, what happened, what was difficult, and put the date each time: it's for afterwards, when you will read it again.

The mourning bracelet: Take a leather tie and beads. Each time an important date comes up (birthday, Christmas, holiday, ...) put a little bead on it. When you look at the bracelet, you will see that time has passed and that you have managed to continue living.(9)

One thing that has helped us heal and has been so good for the kids is that we started fostering kittens a few months after the baby's birth. Kittens are so soft and snuggly. We work with our local animal shelter and care for underage kittens until they are able to get big enough for adoption. It's been a wonderful thing for our family.
- N

We started traditions, like giving a shoebox filled with presents every Christmas to the Samaritan's Purse organization in memory of each child. In the early years, we bought Christmas ornaments to remember the babies.
- Kelly (12)

They celebrate her birthday and this year my oldest (age 12) will make her birthday cake. Each year we take a photo at the gravesite.
- Kathryn


Last word:

This part of our family history has given both girls a deep compassion for others, a stronger faith, and a realisation that our love for them is not based on their abilities or performance.
- P

Our boys are now teenagers, our oldest remembers his sister very well. He wrote a poem many years after her death. I think he was around 11. I'm not changing a thing, sharing it as is, it means so much to me:

To Makenna:
In the spring of ninety-nine
everything seemed to be fine.
My mother was to bear another child
She was so happy she almost went wild.
But then came a day of fear
when bad news she had to hear.
Something had gone wrong
and you was to not live very long.
One day she did see
something that wasn't supposed to be.
While inside her womb, you did kick
even though the doctor said it was impossible for you to kick.
This was a sign of hope
for she thought God was telling her to no longer mope.
Then in the first month of the new year
the time had come for you to be here.
The day seemed dull
as they prayed for a miracle.
When the time came for your birth
it was the saddest sight on earth.
All hope was gone
it was like the world's most depressing song.
Even though you came into this world alive
we all knew you wouldn't survive.
You let out a scream so loud
and mom and dad wondered how?
Even though you would die
God let your mommy hear one cry.
I held your hand
though I was five and couldn't understand.
About six hours had past
before you breathed your last.
You went to a place far away
how far I cannot say.
Even though I miss you greatly
to see you, I may have to wait till I'm eighty.
But for little time on this earth
many will never realize what it's worth.
Some call where you live heaven, where you are always free to roam
but to you, it's always been your home.
For you to come back to us, there is no way
but wait! I have one more thing to say.
Jesus promised eternal life to those who obey
and I promise we will be there with you someday.
Love, your big brother


Children's books:

Talking to children about death is never easy. Using storybooks can be a good way to open these hard conversations and they can also give adults the language to make it easier. Reading stories over and over can really help children understand as they often need things to be repeated, again and again.

Here are some examples of how story books can be used to help children understand what happens when someone or something dies: https://www.childhoodbereavement.ie/other-events-and-information/storytelling-starting-difficult-conversations-with-children/

Why We Need a Children's Book About Death: https://www.thegospelcoalition.org/article/children-death/

Recommended Books:

The Moon Is Always Round
by Jonathan Gibson
New Growth Press
ISBN 9781645070276
Even young children want answers to the hard questions about God and suffering. In The Moon Is Always Round, seminary professor and author Jonathan Gibson uses the vivid imagery of the moon to explain to children how God's goodness is always present, even when it might appear to be obscured by upsetting or difficult circumstances.
In this beautiful, full-colour illustrated book, he allows readers to eavesdrop on the conversations he had with his young son in response to his unborn sister's death. Father and son share a simple liturgy together that reminds them that, just as the moon is always round despite its different phases, so also the goodness of God is always present throughout the different phases of life.
A section in the back of the book offers further biblical help for parents and caregivers in explaining God's goodness to children. Jonathan Gibson reminds children of all ages that God's goodness is present in the most difficult of times, even if we can't always see it.


Our Baby Is Loved
By Abigail Gellene-Beaudoin
ISBN-13 979-8218221195
This is not just a lovely picture book for children whose parents are expecting a baby with a life-threatening medical condition. It's a tool to use with your child, a guide who will lead you on this difficult journey, helping you to answer your child's questions in a caring and appropriate way. Through the book, the child will be able to realise that his feelings – the sad and the joyful ones - are normal and that he's not alone with them.

Wherever You Are: My Love Will Find You
by Nancy Tillmann
I wanted you more than you'll ever know, so I sent love to follow wherever you go... Love is the greatest gift we have to give our children. It's the one thing they can carry with them each and every day. If love could take shape it might look something like these heartfelt words and images from the inimitable Nancy Tillman. Here is a book to share with your loved ones, no matter how near or far, young or old, they are.

God Gave Us Heaven
by Lisa T. Bergren
With tender words, her Papa describes a wonderful place, free of sadness and tears, where God warmly welcomes his loved ones after their life on earth is over. Little Cub and Papa spend the day wandering their beautiful, invigorating arctic world while she asks all about God's home: How do we get to heaven? Will we eat there? Will I get to see you in heaven? Papa patiently answers each question, assuring her that...
"Heaven will be full of everything good."
This gentle story provides satisfying answers for a young child's most difficult questions about what happens after this life, inviting "little cubs" to find comfort in knowing that God Gave Us Heaven.

Water Bugs and Dragonflies:
Explaining Death to Young Children
by Doris Stickney
In Water Bugs and Dragonflies, Doris Stickney tells the story of a small colony of water bugs living below the surface of a pond. Whenever a bug leaves the pond, those left behind are faced with the mystery of their absence. Stickney invites children into the question of their absence.

Summerland: A Story About Death and Hope
by Eyvind Skeie
A child travels through the Dark Valley which is death and emerges into the Summer Meadow of the afterlife, where she meets Jesus and experiences his comfort and love.

Something Very Sad Happened:
A Toddler's Guide to Understanding Death
by Bonnie Zucker
Something Very Sad Happened is intended to be read to two- and three-year-old children to help them understand death and process the loss of a loved one. When a loved one dies, it can be hard to know how to explain it to a young child, particularly if you are grieving the loss yourself. Written at a developmental level that is appropriate for two- and three-year-olds, the story explains death; lets children know that it is okay to feel sad; and reassures children that they can still love the person who died, and the person who died will always love them. Since the two- to three-year-old child cannot read, this story is intended to be personalized; certain words are color-coded in red to cue to you to substitute with the appropriate names and pronouns for the person who died.

My Sibling Still:
for those who've lost a sibling to miscarriage, stillbirth, and infant death
by Megan Lacourrege
My Sibling Still is written as a love letter from a sibling lost to miscarriage, stillbirth, or infant death to any surviving siblings. It walks through the emotions that a child and his or her family may experience following a loss while also depicting the loving presence of the deceased child in the family's life. With gentle words and comforting pictures, this book offers a beautiful way for the entire family to remember and honor any lost little ones. My Sibling Still is accessible whether the loss happened years ago or yesterday, whether a sibling was born at the time of the loss or came afterwards. Most of all, with an affirming message of hope through suffering, it reminds us that our relationships with the little ones who have gone before us continue after death.

This Book Is for All Kids, but Especially My Sister Libby. Libby Died.
by Jack Simon
Jack Simon was five years old when his sister, Libby, died. She'd been born with a rare disorder and wasn't expected to survive six months. But she lived three and a half years, giving Jack plenty of time to get to know her. When she died, Jack struggled to understand how God could take away his little sister. Everyone experiences grief, but children express it differently. Afraid to ask questions that might make someone sadder, children often keep their sorrow locked inside. Jack's mom, Annette, encouraged her son to talk about his pain, and she insightfully began a diary. Jack's questions eventually became the picture book This Book Is for All Kids, but Especially My Sister Libby. Libby Died.

Goodbye Sister
A sibling's book for infant loss
by Kimberly Newton
Kimi is looking forward to becoming a big sister. After learning that the new baby has died, Kimi and her family grieve together. Kimi's parents reassure her that she will always be a big sister.
Goodbye Sister is a story for children who have experienced the loss of an infant sibling due to stillbirth or miscarriage.

The Gift of the Ladybug
by Carole Mac
The book The Gift of the Ladybug by Carole Mac follows the story of a family of horses who discover their child is a ladybug and will not live very long. The ladybug reassures the horses by saying, "I am a ladybug! I don't know how to be a horse. I only know how to be a ladybug." Every day, hundreds of families receive a diagnosis that puts their child's life in danger. The ladybug serves as the perfect symbol of a child faced with a critical illness. Her life may be short, but she's perfect just the way she is.
More information about the book.

Not If But When encourage and support sharing good books and stories about death and loss with children and teens throughout their lives.



* Courageous Parents Network's videos about supporting the siblings of a dying child.

* National Alliance for Children's Grief
National organization of professionals dedicated to supporting children and the networks and communities surrounding them.
In their resource library you can find a lot of helpful pamphlets.

* Hero Toolkit
Learn how to be a Hero to Your Grieving Child or Teen, A hero is someone with integrity and honor, who demonstrates courage, bravery, and nobility. Did you know there is a hero inside of us all, waiting for an opportunity to step into action? After a death, we depend on everyday superheroes, the cape-less crusaders who have powers of listening and empathy, who can have courageous conversations, boldly express support, and who are kind to someone in grief. This Superhero Toolkit, developed for children, teens and their support network, provides activities and conversations designed to empower each of us to become everyday superheroes.

* Siblings Grief and Bereavement
Toolkit edited by the Pediatric Palliatif Care Coalition

* Children Grief Centre Ireland

* The Irish Childhood Bereavement Network

* Dougy Center
The mission of Dougy Center is to provide grief support in a safe place where children, teens, young adults, and their families can share their experiences before and after a death. We provide support and training locally, nationally, and internationally to individuals and organizations seeking to assist children who are grieving.

* Annie's Hope
Provide comprehensive support services to children, teens and their families who are grieving a death. They serve Kids ages 3-18 and their families in the greater St. Louis region.

* Youth and funerals
Contains a very helpful video and e-book.

* What parents need to know about explaining death and grief to a child
An article published by psychosocial staff from the Children's Hospital of Philadelphia.

* Elke Thompson - How to talk to young children about the death of loved ones https://www.youtube.com/watch?v=g82z0hVCqf0
The only way we can protect our children is with the best version of the truth.


References :

(1) L'enfant en deuil. Conseils aux parents et à l'entourgage. Brochure de www.astrame.ch

(2) Kuebelbeck A., Davis D.L., "A Gift of Time" Continuing your pregnancy when your baby's life is expected to be brief. The Johns Hopkins University Press, Baltimore 2011

(3) Fact Sheet 'Funerals and saying goodbye' by the Irish Childhood Bereavement Network

(4) Fact Sheet 'Support a child at the time of death' by the Irish Childhood Bereavement Network

(5) Fact Sheet 'Supporting children before a death' by the Irish Childhood Bereavement Network

(6) Kathrin Gund / Franziska Maurer, Trauernde Geschwister - Orientierung und Unterstützung zum Begleiten von Kindern beim frühen Tod eines Babys, kindsverlust.ch 2010

(7) Hanus, M., Sourkes, B.M., Les enfants en deuil, Editions Frison-Roche, Paris 2002

(8) Témoignages autour de la survivance, AGAPA Suisse Romande, Fribourg 2009

(9) Alix Noble Burnand, Tout sur la Mort, Contes et explications à l'usage des enfants, édité par www.alixraconte.ch

(10) https://www.everylifecounts.ie/stories/talia-finn/

(11) Vollmann, S. R. (2014). A Legacy of Loss: Stories of Replacement Dynamics and the Subsequent Child. OMEGA - Journal of Death and Dying, 69(3), 219–247. doi:10.2190/om69.3.a

(12) Kelly Gerken, Sufficient Grace, Standing in th sacred place where heaven meets earth, Published by Sufficient Grace Ministries, 2019

(13) Wie Kinder trauern, Kinder in ihrer Trauer begleiten. Broschüre des Diakonischen Werks der Evangelischen Kirche in Deutschland e.V.


© anencephaly.info, written by Monika Jaquier and Abby Hatch



Last updated March 2, 2024