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What family and friends can do for parents of a baby with anencephaly

 

Before the baby's birth
When the baby is born
After the baby's death
As time goes by

 

Before the babyís birth

Accept the fact that it is impossible for you to say anything that will make the bereaved parent feel better.

There is nothing you could say in that time that could subside the painÖ nothing even today. That is not your role; diminishing the pain is impossible so just be there and love the baby as you would one that had a long life.
Linda, mom to Jordyn

Say "I'm sorry." Say it and mean it: it will matter.

Avoid cliches, they tend to minimize the loss and the emotions the parents have for the baby.

Sometimes people would say, "She's better off dead that living", and it really hurt.
Karen, mom to Courtney
People and relatives telling you that I'll get over it, that I can have another child, that it was meant to be. Comparing the pain of losing an older child is not as painful if the child was just born and you haven't really got to connect yet. Comments like this are SO HURTFUL !
Nancy, mom to Christine
No one had words of comfort that actually did comfort although they tried. Things like: it will get better, she is in a better place, she didnít have to go through the pain of this world, God wanted her with him sooner, you will be okay, time heals all wounds, at least you have her sister; all nice phrases all meaningless at the time. But their presence was good, it made me feel less alone.
Linda, mom to Jordyn
Some people said "She will be in a better place" or "She didn't need to be tried." Yes, I know that the Celestial Kingdom is a billion times better than Earth, but to a grieving parent, you are also saying that the child was better off not being raised by that parent. I know that sounds ridiculous, but every grieving parent I have talked to says the same thing. Please, don't tell a grieving parent either of these things.
Jill, mom to Isabel Jane

If you are at a loss for words, say so. Otherwise, silence may be interpreted as rejection or lack of concern.

Though people do not know what to say, I would rather they say that, then stay distant. It hurt me when people simply ignored my situation because they did not know what to say. It often comes across as uncaring and I felt very alone at times.
Chantell, mom to Gabriel
There were times that people didn't even acknowledge my pregnancy or the situation. I came to terms with the fact that they just didn't know what to say and felt that if they didn't say anything that would be better. The one thing I learned from all of this is that no matter the situation, always give someone the chance to talk about what they are going through. If they don't want to talk about it, they will tell you. It hurt more when others didn't even comment or ask - it was almost as if Joey didn't exist or matter in their eyes.
Lyn, mom to Joey
I also had neighbours that distant themselves from us b/c I donít know why. I can only speculate that they just didn't know what to say or they thought they were meddling. But the biggest was the facial expressions that acquaintances gave and the look of confusion on why we would continue to "torture" ourselves by staying pregnant when we already know the outcome.
Allison, mom to Ava
The best friends were those who, when they didn't know what to say, said they didn't know, or asked if it was OK to ask. It didn't matter that they might say "the wrong thing" - they were there and that was appreciated.
Tim, father to David and Jonathan

You donít have to hide your own emotions about the babyís condition from the parents.

When people found out about my boy Ben they inevitably had a good cry in my presence, then apologise. I liked seeing them feel for my boy and their tears merely helped me recognise that I wasn't alone, so I'd say them not hiding their feelings from me was a huge benefit.
Lea, mom to Ben and Nara
Davidís' family was wonderful. They cried with us over the phone but most of all were so understanding of our feelings and emotions at that time. A few days after Elijahís' diagnosis, David left for Iraq. His mom still would call just to say "te amo" which means I love you in Spanish. Her not knowing English, me not knowing Spanish all that well, and still her few words meant so much.
Kelly, mom to Elijah

Donít tell them you know how they feel unless you have lost a child.

I know it is hard to hear this but as a family member that is not the babyís parent please know that your pain could never be as great as the mom or dad. I know you are hurting too but know that the parents cannot acknowledge, address or even process your hurt. I know now that my mom and sisters really struggled with the loss of our baby but in it I could not begin to care. I am a caring person and I love my family but I could barely deal with my own pain let alone the pain of others. It sounds selfish but it was my reality and I would believe that I am not that unusual. So donít be offended or hurt by our inability to be sensitive to your needs or pain or if we appear selfish. We must pack a lifetime into hours and days. We cannot do that if we are thinking about anyone but our baby.
Linda, mom to Jordyn

If you do say something insensitive, acknowledge it and apologize.

Listen.

Just the simple words of "I'm here for you if you ever need to talk"... you only need to say it once in a while. I had a friend that kept saying EVERY phone conversation "I wish I could do something for you... what do you need? What do you want?" I said "just listen to me if I ever need to talk or scream or cry". Just knowing someone will be there to listen to you is comforting.
Allison, mom to Ava
Something else I found hard was people asking me how I was as a greeting as not really wanting to listen to the answer. I had to accept that they were just saying hello rather than actually wanting to know how I was. It was the people who asked, meant it, and listened while I explained that made me emotional and who found out what I was really feeling. I didn't mind telling people, but I wanted them to listen. Unfortunately it's not always like this, and we have to be gracious and allow people to separate themselves from our emotions. A child with anencephaly forces people to face many fundamental issues about life, humanity and spirituality that they often would rather not think about. However such thinking is good and healthy. I know what I believe now. I thought I did before David.
Tim, father to David and Jonathan
I eventually met another woman who had 3 years earlier had a baby with anencephaly. Her help and support through that time and also of one very understanding nurse got me through the hardest of times until my hubby was sent back home. (That took 36 days.) They let me talk when I wanted to talk and cry when I needed to cry and never made me feel bad about it. Some women like myself want to talk about their baby, about their plans for the baby's birth and even plans for his funeral. Trying to make what little time I had with him REAL was what I wanted. Not to hide and act like I was not even pregnant just because I knew that he was going to die. I wanted and needed to talk about him, in pregnancy, in birth, and even now in death. There is no magic pill that you just wake up and it is all over but talking does help get you through the good and bad times.
Kelly, mom to Elijah

Allow the parents to talk openly about their child.

Allow them to express their feelings.

Don't doubt the diagnosis nor deny it. Anencephaly is always fatal, and false diagnoses for anencephaly almost never happen.

I also had a close family member that refused for spiritual/denial reasons to acknowledge that my son would die, and continued to buy and present gifts for use when he would be healed. (soothers, school photo albums, etc.) I just wanted to box it all up and drop it on her door step. It was the denial of the situation and the need for that person to 'prove' their faith that was the hurtful thing, not the gift.
Jen, mom to Eli
During my pregnancy, it was helpful for family and friends to acknowledge that Gabriel's condition was real and be there to talk to me about it.
Chantell, mom to Gabriel
My mother in law was in a complete denial about Anoukís condition. Every time I met her, she asked ďthe baby wonít really die, will it?Ē This was difficult for me as I felt I not only had to deal with my own sorrow, but that I had to carry hers too.
Monika, mom to Anouk

Donít force your beliefs on them; save well-meaning advice.

Respect the decision that the parents are making about what they are doing for the baby weather you think it's right or wrong.
Allison, mom to Ava
Don't try to tell them how they should be feeling or what they should do. This is their baby, their flesh and blood, and they alone know in their heart, what they want to do. If they choose to carry the baby to term, don't try to talk them out of it. This is the only life this little baby is ever going to have, so let the little baby live as long as he or she can.
Karen, mom to Courtney
I had a couple of co-workers and even family members that knew what was going on and they asked me repeatedly 'why would you prolong your agony?' (regarding my choice not to have an abortion). It was hard enough to have to make the choice, let alone to defend it before people who wanted me to choose other wise.
Jen, mom to Eli
Even though my closest family didn't want me to go through with the pregnancy because they didn't want me to have to go through more of this painful journey than I had too, they were there for me without negative opinions to take me to the doctor appointments, making funeral arrangements, listening to me when I needed to talk, just being there unconditionally.
Nancy, mom to Christine
My own family wanted me to understand that if I ended my pregnancy, they would think that the right thing to do. They did not want ME to be hurt by carrying a baby who would certainly die either during my pregnancy or shortly after birth. They truly wanted to help. They offered to keep me at the family home, to pay for my support and all medical bills though, no matter what I decided. I misunderstood what they offered and turned away from them completely because I was so very angry that my daughter would most certainly die. I guess, looking back, that I blamed them for even suggesting that I end the pregnancy.
Azariah, mom to Ariel
My mother told me that if HER grandbaby died it would be b/c I didn't pray hard enough. My mother has never been religious and at time seems to act as if there is no God and now she is blaming me for not praying hard enough. I know that she too was upset and much of what she said I need to look past and see that she too was just hurting, and yet even today her words sting fresh in my heart.
Kelly, mom to Elijah

Pray for the parents.

My mom was having everyone at the church that I grew up going to saying prayers for Ava and a friend of mine who is very "religious" her mom had the whole congregation at her church in Florida praying every day
Allison, mom to Ava

Offer your help in practical matters such as cooking, laundry, shopping, etc. Be specific in your offer.

Many people brought us dinners. Some dropped off gift certificates for dining establishments. This helped us since it was one last thing to think about. Many times we didn't think we were hungry, until the food was placed in front of us.
Lyn, mom to Joey
My mum went along to the funeral home to be a support when planning the funeral, in the end my babies came early and thank god my mum knew what I wanted from coming with me as she took over and planned the lot.
Lea, mom to Ben and Nara
I had a friend that was willing to make the first scary call to the funeral home for me while I was still pregnant. I had been afraid of being 'sold' something and couldn't handle that on top of my situation. Her ability to make that call for me paved the way for me to be reassured when I made the call myself that they would be compassionate. My mom went with me to my appointments, and helped take notes sometimes so that I would be able to remember what was said.
Jen, mom to Eli

Be sensitive when helping out; donít take over completely.

Keep communication going with the parents; reach out to them as they may not be able to do so on their own.

Certain family members and friends were kind enough to support me throughout my pregnancy, sending me encouraging words, calling me, taking me to the spa for a day of relaxation
Chantel, mom to Gabriel
I wish my parents and family would have persisted in trying to get in touch with me, no matter what. Guess they didn't know what to do, what to say, and they themselves were overwhelmed by my fury.
Azariah, mom to Ariel

Donít avoid the parents.

When people didn't know what to say, they would avoid me. That was really hurtful.
Karen, mom to Courtney

Offer to buy or make something for the baby: hats, blankets, hand- or foot-molds, etc.

We asked the grandmothers to make Joey's burial outfit. They crocheted a jacket, blanket and cap. They also bought a sleeper for him to wear underneath
Lyn, mom to Joey
My friend did a precious thing for us; she went online when she heard I was looking for and couldn't locate a preemie out fit that suited what I wanted for Eli to wear. She ordered one in as a surprise and brought it to me. She was able to listen to my needs and fill in a gap I couldn't fill. I loved her for it.
Jen, mom to Eli
My dad's eldest sister knitted a shawl for Ceilidh and she was buried with it. My mum gave me the family Christening Robe that had been worn by my brother, me and many cousins and Ceilidh was buried wearing it. Little gestures like that were a great source of love and support.
Yvonne, mom to Ceilidh

Give appropriate gifts to the parents or in memory of the baby.

My sisters held a celebration shower for Joey and I. They invited the immediate family and very close friends for a luncheon. Instead of giving us baby gifts, they gave us money to use towards a get away weekend once Joey was born.
Lyn, mom to Joey
Certain family members and friends were kind enough to and buying me special tokens, like a bracelet with birthstones of both of my boys and a special engraving for Gabriel.
Chantel, mom to Gabriel
In our family, we have the tradition of making cross-stitch pictures for every child, with their name, birthday, weight, length and place of birth, with, of course, a nice image. The pictures are in the familyís house while the children are at home and when they grow up and leave home, they take the pictures with them. My mother made those cross-stitches for my 3 older children. When I got the diagnosis for Anouk, my mother decided that this child would also get her cross-stitch picture, even if she would never be able to take it with her. That picture is one of my biggest treasures as it shows that my daughter was important enough for someone else to spend so much time to make something in her memory. And it's also a great comfort to me to see the 4 pictures in a row in our hall as a sign that we don't have "just" 3 children, but 4.
Monika, mom to Anouk
We were given a "prayer baby shower". The invitation read "Let your prayers be your gift". Over 200 people gathered for a structured serviced led with very specific prayers and soft music via over head projector. Each guest prayed silently prayers for our family. A large gathering was given afterwards and our babyís life was given value to each person. He was beginning to touch hundreds and otherís were feeling the same way about him as we were.
April, mom to Austin

This baby is important for the parents; the baby is their beloved child, even if they know that the baby will die soon.

When we found out at 9 months that he wasnít going to survive my family were very good to me through the birth. They kept popping in to let me know they were there if I needed anything. My in-laws unfortunately thought it was just a fact of life and I took that on board as being very brutal.
Trudy, mom to Jamie
When I chose to tell an acquaintance that my twins were a boy and a girl, and I'd lose my boy her response was "what, can't they just get rid of IT for you?". I'd told her he was a boy and she called him and IT! That hurt me more than I can say.
Lea, mom to Ben and Nara

If the mother is carrying twins with one affected by anencephaly, donít focus on the healthy twin only.

I found it helpful when people didn't ignore me, lots of people just stayed away not knowing what to say but those who took a chance made me so happy, when they asked "how are your babies?" during my pregnancy rather than focusing on just my twin that would survive. I found it hurtful when people would neglect to talk about ~Ben~ as if he didn't exist during my pregnancy.
Lea, mom to Ben and Nara

Try to treat this pregnancy like a normal one in regards to special cravings, outings, and having fun like picking out names, buying gifts and keepsakes for the child (we treasure these even more later on, after our child has left us to go to the hands of God).

It may sound strange, but one thing I really appreciated was a happy card sent to us from my husband's sister. They lost two little girls themselves, while in the process of adopting them from abroad, and after they found out about our daughter's diagnosis they sent me a card. It was pink and had a frilly baby carriage on the front, and the inside said, "Congratulations on your brand new daughter!" Then she hand wrote a note at the bottom that expressed their love and sympathy. It meant a lot to me to know that she understood that, even though our baby was going to have a very short life, she was still our daughter and we cherished her.
Bridget, mom to Julie Claire

 

When the baby is born:

Ask the parents if you can visit them at the hospital and meet the baby.

My husband & I chose to be alone with Ava after she was born b/c we didn't know how long she would be with us and I'm happy we made that decision. She was only here for an hour, the only hour we would have with her. I know my mom wanted to come to the hospital so bad, but we told her not to and she respected that.
Allison, mom to Ava
I had a core group of friends who came to the hospital to meet Gabriel. It really meant so much to me, and he touched their lives so much too. They know how real my loss is.
Chantell, mom to Gabriel
It was nice after I had my babies all of my sisters and family were able to share in Minna's baptism.
Josie, mom to Minna and Maranda
The most hurtful reaction was after Ceilidh was born and my parents and brother held her, but Peter's parents and brother did not. That hurt me so much. Why didn't they want to hold their first grandchild/niece? To this day I don't know the answer.
Yvonne, mom to Ceilidh
The most important thing my family did was to come and meet her. Our twin daughter Jordyn was with us for an amazing ten days. Ten days that we did not know we were going to have. The minute I went into labor my family started to come from all over; as close as across our city to as far as 6, 10 and 12 hour drives away. They dropped everything and hurried to our side. They did not know if she would still be with us but they were going to try to see her. Within hours after her birth she was meeting aunts and grandparents and over the next couple of days everyone had come even if only briefly to meet her.
Linda, mom to Jordyn and Paige

 

After the babyís death:

Acknowledge the baby through visits, phone calls, sympathy cards, gifts, donations and flowers.

Neighbours gave us gift certificates for a garden center. Last spring/summer we used the gift to create a "Joey" garden. We are really looking forward to this spring when everything blooms for the first time. Another neighbour gave us a stepping stone with Joey's name and birth date engraved in it. We incorporated this into the garden. We also received money from our family to purchase a curio cabinet to hold all of the precious gifts we received to remember Joey. It hold figurines, pictures, etc... So everytime we see it, we remember that we do have a precious child. And, it gives people the opportunity (if they chose to) to talk about Joey when they are in our home.
Lyn, mom to Joey
After Gabriel died, it was hurtful to get cards that simply said "thinking of you" or "sorry for your loss". I felt like saying "My LOSS was my SON who has a name, so please acknowledge him and his death." Although I know that these people meant well, it made me angry.
Chantell, mom to Gabriel

Listen to the parents when they want to talk about their baby and accept if they donít.

The only problem I have sometimes is that some family members bring up Lilyana every time I talk to them, and go on and on... sort of sounding like they want comfort from me that I wasn't able to give. I think it would probably be a better idea to go to someone else. I don't want to sound mean or anything, I know that people just want to "heal", but it was just so hard to talk about the same experience over and over, it just makes me stressed out that her birth didn't go very well, and that the doctor that delivered didn't know what she was doing. I will never forget my daughter, but I try to think about the time I had with her, and not about how her birth went wrong, and I don't like to be CONSTANTLY reminded of that.
Sara, mom to Lilyana

Allow the parents to have time alone.

When Jamie died my family stayed with me for a few days and then left. My Mum was especially helpful in taking care of my family. When they left I felt quite pleased because I needed that time to get my head around what had just happened.
Trudy, mom to Jamie

Avoid giving advice unless you are asked.

Donít tell them they will have other children. Children are not interchangeable. No other child will ever replace this baby.

Some things that I remember that didn't help us during our journey, were people saying, "The doctor's could be wrong", "You can have another child".
Lyn, mom to Joey
Some hurtful things were people telling us we could have more children or asking when we were going to try again for another one.
Trudy, mom to Jamie

Donít try to find something positive about their childís death.

Give the surviving siblings extra attention; they often feel very much alone and bewildered when their family structure fells apart. You can provide comfort and reassurance to them and offer the parents some temporary respite from the demands of parenting.

Offer your help in practical matters such as cooking, laundry, shopping, etc. Be specific in your offer.

After Gabriel died, it was helpful for them to make an effort to check-in with me. Instead of saying "call me if you need anything" I had many people call on their own, drop by, make meals, which was unsolicited. I have a hard time asking for help, so this made it so much easier for me to get it.
Chantel, mom to Gabriel

 

As time goes by:

Check up on the parents. Their grief doesn't stop at the death of their baby, and they need to know that others are thinking of them.

Let them know that you still think about the baby; continue to talk about the baby. Mention the baby by name. The parents' greatest fear is that no one will remember their child, and if the child's name is never mentioned or the subject avoided, it is a natural conclusion.

My mother in law avoided talking about Ava for months and then we asked why and she said that she thought we wouldn't want to talk about it so she never talked about it. She made herself appear as if she didn't care.
Allison, mom to Ava
When Jamie died my family stayed with me for a few days and then left. Ö Unfortunately I didnít realise that would be the last time we spoke of Jamie. Nobody ever bought his name up again and when I mentioned him, they told me not to dwell on it. I really thought I had let everybody down. Nobody discussing him was the most hurtful of all. It was like he never was which was so untrue because he was and still is a big part of my life. I think if I was to give any advise, it would be to treat the baby like they were part of the family. They may not be with you physically but they are still a part of the family tree.
Trudy, mom to Jamie
My mother, in particular, kept talking about Courtney and asking me questions. Then the Center for Disease Control questioned me. I was constantly made to talk about Courtney, and it really did help after a while. It kept me from holding in my feelings and keeping them to myself. Talking actually made me feel better.
Karen, mom to Courtney
This past Christmas, my uncle stood up in front of the family (ok, my mom is part of a 10 kid family, and Christmas get togethers consist of Aunts Uncles, Cousins, second cousins and their husbands and wives.....close to 100 people celebrating the holiday!) and said "We lost a little sweetheart this year and we know she is with Mom & Dad (my grandparents) watching down on us all. And to know we are all here for you if you ever need anything. We miss her too." I am very grateful for my big family.
Allison, mom to Ava

Do something in memory of the baby

The hospital where Joey was born has a Garden of Hope. Memory stones can be purchased to remember the loss of a child. The school that I teach at collected money for the stone. Every year, the hospital holds a memorial service to remember those that lost children. It helps Ken and I to realize that little pieces of Joey's memory are everywhere
Lyn, mom to Joey

Donít impose time limits on the parentsí grief. Grief cannot be governed by any clock or calendar. And be aware that they will always miss their child.

Now I am battling reactions from people about my grief....'oh it's been 8 months, shouldn't you be over it?"
Lea, mom to Ben and Nara

If the parents cry and get emotional when you talk about their child, it isn't because you have hurt them. Their child's death is the cause of their tears. You have talked about their child, and you have allowed them to share my grief.

Being bereaved is not contagious; donít shy away from the parents. They need you more than ever.

Do remember them on special dates (birthday, Mother's Day, holidays). These family times are an opportunity for you to be in touch and give support and attention. Visit, write and/or phone the parents to acknowledge and remember the baby's life and to support the parents.

On Anoukís birthdays, my mother and sister always send a card with some money for the flowers on her grave. That makes me feel so good to know that sheís not forgotten in our family and they offer a small gift in her memory.
Monika, mom to Anouk

Accept that the parents have changed. Parents who go through the trauma of having a child die do not come through the experience without having changed in many ways.

Depression, anger, frustration, hopelessness, the questioning of values and beliefs are normal grief reactions.

Remember, they need you now, more than ever.

Be honest when announcing your own pregnancy or that of others, but choose the moment and your words carefully.

Also another word of advice, If you happen to be pregnant and excited about it - please be sure NOT to call the family that is losing/has recently lost a baby to gush ad nauseum about your new addition and tell them about your perfect baby's two arms, two legs, and a 'nice round little head'.
Jen, mom to Eli

Understand that for some parents, it may be a wrenching experience to watch others with their children.

 

Last updated January 14, 2010