I feel guilty for not saving my baby daughter's life - why is it still so painful?
Twenty-six years ago, I lost my daughter to cot death when she was a few weeks old. Her siblings were seven and three at the time. They knew she had died (my eldest son and I found her) and both came to the funeral. Afterwards my husband and I felt they were probably too young to understand, so we stopped talking about her. I have marked her birth and death days ever since but nobody else in the family has mentioned her for years. My husband becomes highly distressed if I ever try to raise this, which is why we’ve never kept her photos on display, which would have been my preference.
Two things have recently made me think of her more. The first is my eldest son and his wife are expecting a baby. It’s brought back so much and I feel I should say something, but I don’t know where to begin. I would hate myself for hurting them. The second was Charlie Gard. I watched his parents fight and it made me so guilty I didn’t do the same. I couldn’t save her and I did not push for her to be remembered by our family. I feel like a failure and a bad mother and that I let her down. Why are these feelings still so painful? I don’t want to be silent about her anymore.
I am sorry to hear about your daughter, and I can see why recent events are making life so difficult for you.
I’ll come to how you might approach your son, but first I wanted you to know you are not alone in your loss being amplified by the recent news coverage. I’ve had other emails from parents who have either lost a child to accident or illness, or whose child has a terminal condition. All have been struggling with the many issues raised by Charlie Gard’s case.
Why you can’t always fight
The idea of fighting to keep someone we love alive is a powerful and understandable instinct.
We are surrounded by media and charity messages about people battling serious illness, and sometimes this can be exactly the right motivation people need to keep going.
But for others it is not the right message at all. It can make people feel exhausted, guilty or ashamed. The idea of fighting to keep a loved one alive is often unrealistic or impossible. It is tragic and deeply unfair, but there are some conditions that are simply not survivable. We may not always know why, and it doesn’t matter what we did or didn’t do - the outcome is sadly the same.
You are not a bad mother, nor a failure, because your baby died. In your longer email you told me much more about her and sent me her photo. She was beautiful and I was very touched you wanted to talk to me about her.
Caring for you
You want to know why you still feel pain? Because over time loss doesn’t stop hurting. And in your case, since you were never able to really grieve openly nor as you wanted, there’s not been any chance to let go or move on.
Our understanding and awareness about SIDS (Sudden Infant Death Syndrome, also known as cot death) has changed dramatically in the time since you lost your daughter. That’s both in terms of how we now educate parents about safer sleeping for babies and offering bereavement support and care after loss.
Nowadays it would be different. You’d hopefully be offered specialist care and counselling and encouraged to remember your baby, talking about her with her siblings. Not everyone finds this easy, but it can be managed with wider help from counselling or support groups.
There are clear reasons why you want to talk about this now, and there’s no reason why you should not do so, despite being silent for so long.
I wouldn’t try and manage this alone, however. You – or anyone reading this who has experienced baby loss, no matter when – can talk to the following organisations:
You may also want to note things you would like to do now for her. For example, you might want to put her pictures up at home, or to talk about her whenever you wish. Many hospitals host annual memorial services for babies lost during miscarriage, stillbirth or infant death. Would you like to attend one? What would help you with your grief at this point in your life? If you’re not sure, the organisations above can help.
Help for your husband
Your husband and you had very different ways of coping. Neither of you had a 'correct' reaction to loss - we all grieve in different ways.
However, while he managed by not talking, his decision has impacted on you, too. It’s okay to tell him all that you’ve told me. Explain while he may still want to cope by shutting things out, it is no longer something you feel able to do and the more you try and do it, the more distressed it’s making you.
Counselling for both of you may be helpful to talk over your loss, particularly since you’ll both be grandparents soon and, from your message, this is something you are both looking forward to and will be actively involved with.
I very much doubt your son has forgotten her or her passing, but he has learned not to discuss it - you will need to start the conversation
Your husband could speak to the organisations above, or speak to Cruse Bereavement Care. You could see a counsellor together, or separately. All this can help you compromise on how you want to include your daughter in family life without causing unnecessary pain. For example, he may prefer not to discuss this at all, but can agree that it’s important for you to do so – possibly with people other than him and in places he isn’t present.
Perhaps in the past he felt he had to be strong for the family. Or believed if he did begin to share his feelings he would unravel so stayed silent to prevent this. He may now want to open up.
Making space to talk, not expecting everything to be resolved with one conversation, and agreeing to talk with kindness and compassion are all ways to help you both navigate this after so much time shutting it away.
Support for your son
In your longer email you describe your relationship with your son very positively and that’s a good foundation for difficult conversations. I agree you should talk to him. He was seven when his sister died. I very much doubt he has forgotten her or her passing, but he has learned not to discuss it - so you will need to start the conversation. He may have many unanswered questions and anxieties about what happened, and with approaching fatherhood these may be amplified.
Talking about this now also means during those emotional moments when the new baby arrives if you are distressed you won’t have to reveal something heartbreaking at what should be a very happy time for the family. Nor feel you must control your feelings more tightly than ever.
All of you may have many emotions when the new baby comes, but if everyone’s aware of your past loss then all reactions – happy and sad - will be understandable.
It is worth knowing family health histories, and your son being able to convey to the midwives and health visitors any worries about SIDS could be important. And allows health professionals to be sympathetic to your son, his wife, and you.
Talking to him is best done face-to-face when you know you won’t be interrupted. Ask him if he remembers his sister. Allow him to ask you any questions he may have. Tell him how you feel. It’s understandable you might find this very emotional – as may he. You may want to have some photos or other mementos to show him, should he want to see them (don’t be offended if he doesn’t, he may need time). You may need more than one conversation to cover this.
It might be he remembers a lot, or very little. He might be angry about how it was handled, or he might be relieved it’s now being talked about. You can stress to him you made all choices with the best intentions and are now seeking the support that wasn’t available to you at the time.
He and you can decide together if, how, and when to raise this with your daughter-in-law (assuming he has not already done so). Making it clear this is something you want sharing, but it isn’t in any way meant to detract from the new baby or cause him or his wife alarm. You’re talking about it now so you can enjoy being a grandmother.
Both of your children, but particularly your son, may want to talk to the charity Child Bereavement who are there to help people who have experienced the loss of a child.
Moving forward
In the past baby loss was treated with shame and stigma, but that is changing. Stories like yours are part of this shift and will undoubtedly help many other parents in your position.
You have clearly been a good mother and your baby has never stopped being your daughter. She will always be with you. You didn’t let her down.
Petra Boynton is a social psychologist and sex researcher working in International Health Care and studying sex and relationships. She is The Telegraph’s agony aunt. Follow her on Twitter @drpetra.
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