Whilst we think that in some ways this is an inevitably isolating experience, we have felt very well supported. Overall, we believe that people have done the best they can to understand what we are going through and to support us, but ultimately nobody else can ever understand and also they have their own lives to get on with. We have felt loved and we have felt cared for by the vast majority of people that we know.

We also appreciate that bereaved parents have a very important role to play in making people feel able to talk about their child and able to support them. We have always tried to be open about what has happened and about how we are feeling.

Summary

Things others can do, which in our experience have helped:
• Send a card straight away, let the parents know they are not alone
• Introduce an element of congratulations to celebrate the child’s life
• Say well done on giving birth to acknowledge what the mother has been through
• Don’t leave it too late to get in touch or overlook the fact you had a baby
• Mention the child by name to fully acknowledge their existence
• Take cues from the parents about how much they want to talk about their child, you probably aren’t going to upset the parents further by talking about their child
• Offer specific practical help & to visit: even for 10 mins & even if it involves a long journey
• Support the child’s extended family: they have lost a grand-child/niece/cousin
• Recognize how isolated the parents must feel in a society where 99/100 babies survive
• Listen. Don’t try to provide any answers & don’t speculate about what happened
• Remember the mother has recently given birth and be mindful of her physical recovery
• Invite the parents round for dinner, a quiet drink, or offer to go round & cook for them
• Be extremely sensitive to the bereaved parents perspective when discussing or sharing anything associated with pregnancy, birth, babies or children
• Help the parents remember their child with a locket, memory box, or planting something
• Reflect on and share how the child’s death has affected your family & outlook on life
• Don’t say ‘you can always have another child’ or ‘she’s in a better place’
• Continue your support long after you initially think it might be necessary
• Be aware the parents will never stop thinking about the child who died. Life’s natural order has been turned upside down
• Remember the child’s birthday; comment on what it might be like if they were here

Things we have done to try to help ourselves:
• Keep a diary of time spent with your child, or your thoughts about the child
• Take pictures and video if possible, and make a photo album
• Make it clear you want to talk about the child who died, assuming this is the case
• Be as open as possible with friends & family to avoid the child becoming a taboo subject
• Organize a ceremony or party to mark or celebrate the child’s life
• Think of how you could involve others in remembering your child, e.g. a regular gathering
• Find a suitable box to store & cherish the child’s things
• Put a picture up in the house and/or in your wallet
• Make a CD of the music you feel is appropriate to remember your child by
• Raise money for a relevant charitable cause, such as ‘SANDS’ or ‘Sparks’
• Help the hospital to continuously improve their care for bereaved parents
• Get bereavement counselling, preferably from a specialist in baby loss
• Use the resources of SANDS: website, network meetings, books, web forums

How people can help

Talking about Eva
Mentioning Eva’s name is important to us, to feel that people acknowledge she existed. Not mentioning her feels as if people deny her existence. We have met friends in the months following Eva’s birth and death at social occasions and they have not mentioned her or what we have been through. You would never do that if the child had lived, just not mention that someone had given birth and had a child. She is a huge part of our lives and should not be ignored.

People may feel awkward about bringing up the subject as they don’t want to upset us. The truth is that they cannot make us sadder or cannot ‘make us cry’ the tears and the pain are there, they are not causing them. I think we are very afraid of this in our culture, we have noticed that sometimes people from other cultures are not as afraid of talking about death and grief.

We for our part have always tried to be as open as possible so that people can feel comfortable with mentioning her name. Eva is not and never will be a taboo subject.

Sometimes listening is the greatest support. Friends and family have helped by giving up the time to listen to us going through what happened or how we feel again and again as we try to process it.

People shouldn’t feel like they have to come up with words of wisdom or any answers. There are no answers. Sometimes we just need to talk or to cry.

Bereaved parents might want to hear an element of congratulations on the birth of their child. Louise gave birth to a beautiful baby girl and it makes us sad to overlook that in the context of her death. They might also like to hear a ‘well done’ on giving birth, it is no less difficult to carry & give birth to a child that does not survive.

Remembering Eva
We long for Eva to be remembered, to be a part of people’s lives even though she cannot cry out for attention. We hope that the tree planting and celebration we organised helped people to get to know her a little better and that the day might become a shared memory that could help to keep her a part of their lives.

We love to hear from people what Eva has brought to their lives. Many people have spoken about a renewed appreciation for their own children, their own lives, and for the fragility of what we have, or to enjoy the present because we truly never know what might happen.

In the future it will help us if people acknowledge her birthday, to mention they have remembered.

We want people to understand that Eva will always be our first child, our eldest daughter and a member of our family.

Friends and family have done some beautiful things to help us remember Eva – e.g. giving me a locket that I carry a lock of her hair in, giving us seeds for a rose that we can plant and register in her name, giving us a memory box with little notes in telling us what Eva means to them.

Making contact and keeping in touch
We greatly appreciated all the cards, emails and calls in the early days following her death. It helped us feel that we were not alone. Some people shared stories of infant loss from their own, or friends or family experience. Again this helped us to realise we are not alone in going through this.

Some people offered practical help in the very early days such as turning up with supermarket shopping or a big pot of casserole. Don’t wait to be asked to do something helpful: think of something and offer that. If you live a long way away still offer to call round: even if it’s only for 10 minutes. We found efforts such as these incredibly supportive.

Our friends never hesitated in asking to see us or in inviting us out for social occasions. That was so important. It would have been very hard to find the strength to instigate those arrangements ourselves so it was so wonderful that they were not afraid to ask us. They were also understanding on the few occasions that we didn’t feel up to it and had to cancel at the last minute as we were having too tough a day that day.

It’s vital that people maintain contact. As the weeks and then months go by, friends & family inevitably get on with their own lives: the shock & horror of the baby’s death subsides much quicker for them. However, grief for the parents carries on and it means a lot to us to receive a call / email / text just to say, “I was thinking about you” or, “I was thinking about Eva.” It’s important they don’t give up if the parents don’t get back straight away: replying can take a lot longer than normal.

Our grief and loss
Our experience has been that many people don’t realise how long the grieving journey is. Even though the surface of our lives appears to have regained some normality with returning to work and socialising, our lives are still dominated by the sadness of losing our daughter. We read somewhere that this intense grieving usually lasts for about 2 years but everyone is different. Nearly a year on, Louise still cries for Eva every day and each new day brings hurdles and challenges to overcome: seeing a newborn baby, seeing a mother cuddle her child on the tube, dealing with an insensitive comment. We are constantly reminded of what we have lost.

We will never stop missing Eva. Although we may learn to live with the pain of her loss we are never going to stop wishing she was here or imagining what our family would be like with her present here. If we are lucky enough to go on and have other children there will always be someone missing. That is with us for a lifetime. In this way, losing a child is very different from losing a parent or grandparent. The grieving processes may appear very similar from the outside, but when a child dies a full lifetime of plans, up-bringing and a shared future disappear. The natural order of life is turned upside down.

Just because there is no baby in her arms, the mother has still just gone through pregnancy and labour. In terms of her own physical recovery, she needs to be treated the same as a mother with a live baby. Don’t expect her to be up for a game of tennis straight away.

Our families
Our parents lost a grandchild. They grieve for her and they grieve for us, their children. They need support and love from those around them too. Eva was also a niece and a cousin and her death affects all those who should have seen her grow up as a part of their family.

The most unhelpful or hurtful things
To tell us we can always have other children. Eva was a unique, precious, and irreplaceable life. If someone had lost their partner, no one would tell them “there are plenty more fish in the sea, just marry someone else.” They would acknowledge the loss of that individual.

To not contact us at all. We can understand it must be difficult to make that first call or to know what to say. Just say you are sorry to hear our baby died and that you want to know how we are doing. A few people in our lives have not felt able to make contact with us. Maybe they are afraid of what we might have become or maybe they just don’t know what to say or how they can be of any help. We would say that just knowing you have friends who care about you is an amazing support.

To tell us ‘Eva is in a better place’ or ‘this is all part of a plan’. The best place for Eva is in our arms and we don’t believe in a big plan but if there is one we don’t want to know about it if it includes the death of our daughter. Do not assume that what comforts you in your faith will comfort us.

Don’t speculate on what happened. If you are not a medical professional who has read the medical notes – don’t comment! It is extremely difficult to process the events that lead to the death of your child without half-informed people offering opinions or advice from a position of ignorance. It has caused us many hours of additional confusion and pain that could have been avoided.

Not considering how something might sound from the perspective of someone who has lost a child, especially when the subject is around pregnancy, birth, babies or children. Bereaved parents are extremely sensitive about these subjects. Do talk about them if they are OK with it, but treat the parents with extra sensitivity and imagine how it might feel for them to hear what you are saying. For example ‘we had such a nightmare, our baby kept us awake crying all night’… we never got to hear our baby cry once.

A poem by an anonymous author (a bereaved parent) which sums up some of what we have said:
PLEASE, don't ask us if we’re over it yet.
We’ll never be over it.
PLEASE, don't tell us she's in a better place.
She isn't here with me.
PLEASE, don't say at least she isn't suffering.
We haven't come to terms with why she had to suffer at all.
PLEASE, don't tell us you know how we feel,
unless you have lost a child.
PLEASE, don't ask us if we feel better.
Bereavement isn't a condition that clears up.
PLEASE, don't tell us at least you had her for a little while.
When would you choose for your child to die?
PLEASE, don't tell us God never gives us more than we can bear.
PLEASE, just say you're sorry.
PLEASE, just say you remember our child, if you do.
PLEASE, just let us talk about our child.
PLEASE, mention our child's name.
PLEASE, just let us cry.

Some of the things we have done to help us with our grief
Keep a diary of the time spent with your child, or thoughts about your child. That way you won’t lose them, and it might help you to keep track of where you are in your journey.

We planted a tree for Eva and invited 50 of our friends and family to share in the occasion with us. We wanted a mixture of reflection and celebration. We hope we will share times with friends and family there in the future.

We bought a beautiful wooden box in which we keep her possessions – the clothes she wore, her blanket from hospital, our hospital scans from 3 and 5 months pregnant, her cot card from the hospital and other items that have meaning for us. It is in our lounge room where we spend most of our time at home.

We have pictures of her in our house and in our wallets.

We printed out all our pictures from the hospital and put them in a photo album so that we can look through our story together.

We made a CD of the music we played at her funeral and gave it to those who were there (our parents and siblings).

We are fundraising for research into birth asphyxia.

We contributed to the hospital’s re-write of the booklet they give to all parents who lose a baby.

We have bereavement counselling together and we have attended some SANDS (Stillbirth and Neonatal Death Society) support groups and services.

April 7, 2009