If you are reading this because the worst has happened, I am so very sorry. There are no words that can make you feel any better, but I hope this shows you what you are feeling and experiencing is normal.
What I have written in this post is based on my own journey since my son, Hugo died at the start of this year. Hugo had been born 16 weeks early, spent his life in a neonatal intensive care unit and died in my arms at the age of 35 days. The months since have been the worst of my life – but I am surviving – and you will, too.
How you are likely to feel
Losing a baby is overwhelming. You may feel a range of emotional and physical reactions such as being disorientated, lonely, angry, guilty, and exhausted. Grief can also feel like physical pain – it can feel scary.
Your grief journey cannot be measured in ‘normal’ time because it is likely to be something you will never fully recover from. You will have good days and bad days, and as time goes by the good (or at least better) days will hopefully become more plentiful.
You may have heard of the stages the bereaved go through including denial, anger, bargaining, depression and acceptance (the Kubler-Ross model). The model can be helpful because it can reassure you that your feelings are normal. However, when read in black-and-white it can suggest that you will methodically go through each of the stages and one day feel better.
Unfortunately as the chart below illustrates, grief is not like that. It is messy, unpleasant and painful. While the intensity of the pain does gradually ease, the process is not linear. That means you can have a run of good days and then something (or nothing at all) can send you right back to where you started. It can be very frustrating. Try to be kind to yourself, and not expect too much of yourself. It can be best to take things on a day-by-day basis.
Grief is very individual. You may find you grieve differently from your spouse/partner. In a heterosexual relationship, how we deal with the loss of our baby tends to conform to gender stereotypes with the mother being very demonstrative about her grief and the father finding things to distract themselves with. You are likely to be at different stages at different times. Try to respect each other’s needs: it is crucial to talk often about how you are feeling to minimise further hurt by falling out or having rows.
Things to say and do
Collect mementoes of your baby – things like photographs, foot and hand prints can be a helpful physical reminder of your baby. We have framed photos of Hugo on our mantelpiece, and both my partner and I have jewellery with Hugo’s hand and footprints on. Display the mementoes in whatever way is right for you.
It is ok to not be ok – and to say you are not ok.
People may say silly and insensitive things to you. You’ll know that it is mostly not intended to be hurtful, but knowing that is usually unhelpful when you are on the receiving end. Some things people say, especially when you are having a bad day, will make you want to punch them. It’s probably best if you don’t punch them, but there’s no reason why you should always have to bite your tongue if someone has done something to upset you. Don’t hold it all in – you are entitled to have a meltdown. Try not to worry what other people think.
Express your feelings as much as you can and in whatever way is right for you. Talk, write (it doesn’t have to be on a blog, it can just be for you), write letters to your baby – get those feelings out. It can feel cathartic.
Family and friends will want to offer help. This might involve going to the supermarket for you, or providing a listening ear. You will usually need to tell them how they can best support you – which can often be difficult because you don’t know what you need yourself.
It’s fine to want company, and it’s fine to need space. Let people know how and when to get in touch with you. In the earliest days, I wanted to see very few people. I found texting easier than talking on the phone or face-to-face because it was easier to sort out my feelings and what I wanted to say.
On a good day, you may make plans to meet a friend but when the day comes you realise you can’t face it. That’s fine – your real friends will understand.
Every day things that were fine before are likely to take on a different significance after the death of your baby. There will be poignant reminders of your loss everywhere: on the TV, in books, magazines, and on the internet, out and about. Do whatever you need to do: avoid certain programmes; turn the TV over or leave the room during advert breaks (after suffering a loss you realise how many feature babies); hide updates on Facebook by friends who regularly post baby photos.
It’s really important to get support. Here are a few things and organisations that I have found helpful:
- SANDS helpline – 020 7836 5881. It is open Monday to Friday: 9.30am to 5.30pm
Tuesday and Thursday evenings: 6pm to 10pm. On the occasions I phoned I had to leave a message, and a kind lady called back about 10 minutes later. I found talking to the helpline invaluable because they just listen, and don’t offer judgement or try to offer advice.
- I found the SANDS leaflet Saying Goodbye to Your Baby extremely helpful.
- Online magazines like Everlasting Footsteps and Still Standing share other bereaved parents’ stories, and it can be good to know you are not alone in what you are feeling.
- Formal counselling can be crucial to help you find your way through your feelings to find your ‘new normal’. The support that is available will differ by area: some hospitals will offer it to parents. If it is not offered, it can be worth calling the hospital to find out – sometimes the offer is not communicated effectively. For families who have suffered the loss of a baby on a neonatal unit, Bliss is able to offer six free counselling sessions. Call their Family Support Helpline on 0500 618 140. Failing this, counselling is often offered by locally-based charities – you may have to do a Google search to find them.
Have you anything to add? What have you found helpful?