When a CDH baby passes away their parents are left living a life of unimaginable pain. The support of family and friends means the world to these parents. Often it is hard to know what to do or say, and sometimes well-intentioned words can hurt. Our families have come up with a list of things that people can do or say that are helpful and supportive, as well as a few things people tend to say that are really hurtful.
“How we walk with the broken speaks louder than how we sit with the great.”Unknown
How you can be supportive
“As a mother, all you want to do is protect your baby. As a mother to a baby who has died the only thing I have to protect is his memory; thank you all for helping me do that.”Lara, mum of Jackson
We understand that not everyone is going to know what to say. Something simple like “I’m sorry for your loss” is okay. Or even saying “I just don’t know what to say but I am here and more than happy to listen.” This is so much better than having people making small talk and ignoring the elephant in the room.
- Call our baby by his/her name. We love to hear our child’s name spoken.
- It’s OK to ask us about our labour, birth and child’s life. Most of the time we will be only too happy to talk about all of this for hours. If you catch us on a day where it is too upsetting to talk about don’t be offended. It’s not personal.
- Offer help in other ways if you have trouble talking, i.e., make meals, babysit other children, mow the lawn, clean the house, walk the dog.
- Acknowledge us on special days. Sending us a card, an email or even a text message on our baby’s birthday/death anniversary will mean the world to us. The same goes for Mother’s Day, Father’s Day, our birthday and Christmas time. Special days where people normally spend time with their families can be extremely hard. Having someone let you know that they are thinking of you is truly appreciated.
- Depending on the circumstances of our child’s death we often only receive sympathy cards in place of baby cards. Most bereaved parents love to receive “Congratulations on your new baby” cards as these acknowledge our child’s birth as well as their death. If you are unsure how the bereaved parent will react there is nothing wrong with asking them. Information Sheet
“Don’t be afraid to speak our child’s name. Don’t feel like you are going to make us sad because you spoke his name. We are sad already. Knowing that he is loved and remembered and important to you brings us joy, even if we shed a tear at the same time.”Lara, mum of Jackson
“Talk to them about their child. Ask questions about them. Let them know it is ok to have bad days.”Carmel and Daniel, parents of Arabella
“Don’t be afraid to mention the baby.“Helen, mum of Damien
“Just listen when people want to speak about their child – sometimes all we need to know is that someone cares about them.”Sharna, mum of Nala
“Just be there for them.”Matthew, dad of Nala
What not to say
Anything that begins with these words is more than likely going to end up upsetting us. When your child dies there are no ‘at least’s’.
“You are so lucky to have other children,” or “You can always have more children,” or “You are only young. You have plenty of time.”
No matter how many children we have or will go on to have none of them will ever be the child that we had to say goodbye to. Other children don’t take away the pain and longing we will always feel. And besides, how does anyone know that we can have more children?
“It’s been x amount of months / years. It’s time to move on.”
Most bereaved parents do live full and happy lives. Getting to this stage can take a long time though and no two people are the same. Nobody should ever be expected to meet a deadline, especially one set by other people. We will always want to talk about our child and we will always cry for our child. Please just accept that, as it is normal.
“You’ll get over it.”
No, we won’t. Not in a million lifetimes. Over time, we will certainly learn to live with it but we will never ever get over the death of our child.
“Everything happens for a reason.”
There is no reason anyone could possibly give us that could be better than having our child in arms.
“It wasn’t meant to be.”’
Every life ever created is meant to be. Our child died because they were too sick to live. Not because they weren’t meant to be.
“Time heals all wounds.”
Time can never heal the wound caused by the death of your child. We learn to live with the wound but it is there for the rest of our life.
“It was for the best” or “It’s a blessing as they would have had so many problems.”
The best and the only blessing is having a beautiful healthy child in our arms.
“They are in a better place.” or “God needed another angel.”
There is no better place for our child to be but in our arms. It is a simple as that.
“You must have done something for this to happen.”
There was nothing that we did or didn’t do that caused our child’s CDH. Even if there was, we certainly don’t need people making us feel guilty or responsible for our child’s death.
“At least they were never alive, that would have been so much worse for you.”
Our child was alive. They spent precious weeks/months tucked safely in our wombs. Whether our child was born sleeping at 20 weeks or alive at 40 weeks, they are our child and we feel the same level of devastation.
“I know how you feel.”
Unless your child has died you don’t have a clue. Even amongst bereaved parents experiences are different and no one other person can fully understand the impacts 100%.
“It would have been worse if it was a girl/boy (whichever is the opposite sex to our other children).” or “It would have been worse if it was your first/last child.”
Nothing is worse. It doesn’t the sex or birth order, we love all of our children with all of our hearts.
“What a waste of x weeks/months!”
Yes, this has actually been said to bereaved families. Our child’s life never has been and never will be a waste of anything.
“Remember that it is about them, not about you. Sometimes you may find it hard or uncomfortable, but whatever your feeling isn’t a patch on what the parents are going through. Do not put a time limit on how long it takes to grieve. Talk about the child, say her or his name and don’t be scared to ask questions about them. Put the birthday/anniversary in your calendar so you know when these special dates are and acknowledge them. Have a photo of the child in your house.”Linda, mum of Emma
“Never say words that start with ‘At least…’ Don’t put a timeframe on healing. Everyone will work through their grief at a different pace. Support, don’t judge.Danielle, mum of Alyssa
Drop meals around, turn up and say “I’m here to mow your lawn”, take siblings for a fun day out. Saying “Let me know if I can help with something” won’t work. Asking if you can do something often doesn’t work either. Just doing is often the best way as long as the family are comfortable allowing you to do so. Don’t be upset if the bereaved parents don’t want to talk or see you on any particular day. It’s not personal. They might just need to be alone. Show you remember their baby and speak their name. Put special dates (birthday, anniversary) in your calendar and call/send a card/send an email/send a text. Not all but whatever feels right. It will mean the world to the parents.”
We can never express just how much your love and support means to us during the worst days of our lives. Thank you from the bottoms of our hearts.”
With love from the bereaved families at CDH Australia