Go to content; Go to main menu; Go to languages.

Anencephaly thoughts from a 'sideways stakeholder'


David was my first nephew. I learned of his existence and his condition at the same time. He was born 5 weeks after that, at 25 weeks gestation, along with his twin brother Jonathan, who did not have anencephaly, in March 2005 His funeral was held about three weeks after his birth..

'Sideways stakeholder': What kind of label is that? Well, 'stakeholder' because this baby is part of my family too. This issue affects me. And 'sideways' because, well, somehow I just don't feel like I'm in the 'direct line', whatever that might be.

The hard bits:

Not wanting to crowd my brother and sister-in-law at a really difficult time for them, or insensitively demand information or ring at a bad time – but deeply fearing being 'left out of the loop' and not being told important information. All the scraps of information – even little things that don't seem important – were the only way I had of ever hoping to build a relationship with my nephew who would not survive. I craved them all.

One solution that worked quite well for us was for Tim (my brother) to set up a couple of 'contact points'. These were people he e-mailed with information updates as and when they arrived, and it was their job to disseminate the information (usually by forwarding Tim's e-mail or phone information) to anybody who was interested and wanted to know more.

I often felt like people at work didn't understand the kind of emotion I was trying to process. It was so complicated! I often felt that they would think 'but what's her problem, why is she still so upset, it's not like it's HER baby'... but I have no children of my own and some days it felt a lot like it was my baby. Grappling with guilt ('what right do I have to be this upset when it's Tim and Lisa who have to deal with this really'), deep philosophical issues ('is this baby 'alive', does it have any concept of his identity? Because I have a concept of his identity so to me he is alive and will die', 'how can I grieve for a baby I will never know and who will never know me, what is this 'non-relationship' that translates into such a feeling of loss and being robbed?') and struggling with empathy ('if I feel this bad, what must it be like to actually carry this baby who will never see the light of day?')... all in a context of uncertainty ('when will he be born? Will I be able to see him? Will Tim and Lisa want to be on their own? Can I even ask to be there?) was really hard work.

It was frustrating to want to support and help Tim and Lisa but to not know how. After a diagnosis like that, to be honest there is very little anyone can practically do, other than be shocked and wonder what will happen in the weeks to come. It is easy in retrospect to consider that I could have been more direct in some of my questions 'Is there anything you would like me to do to help? Is it ok to ring you any time if I have a question? If I were to come down and visit would you consider it more of a hindrance than a help? If I ring and it is a bad time, will you tell me? If I want to talk about it and you don't, will you tell me?' They are all questions that burn in ones' head but never quite make it to the light of day. Perhaps they should.

Practical questions can be confusing too; 'I want Tim and Lisa to feel like I accept David but how can I do that? Should I buy him a present? What is the point? He will never use anything I buy... ' In the end I bought David a blanket and his twin brother (who was unaffected with anencephaly) some premature-sized baby clothes (that were still twice his size!). I figured if they wanted to keep the blanket as something 'belonging to David' then they could – but equally if they wanted it to be useful then they could use it for Jonathan too. I tried to explain this to them as best I could. David was buried in a small coffin, tucked up in his blanket.

The hospital

Tim and Lisa were gracious enough to let me come to the hospital right after David was born. I arrived within 15 hours of his birth ( he lived for 15 minutes) and was the first person to see him other than his parents. I guess people are all different but I really needed this whole event to be real; I needed to see and feel, to touch and hold, to wonder and cry, be amazed and overwhelmed with sadness all at the same time. David had such tiny hands and feet. I cuddled him and said 'hello'; he was so small and fragile... I took off his hat and looked at his head... Tim and I laughed at the fact that I was all fingers and thumbs and couldn't get it back on... the nurse came in and helped us take ink prints of his hands and feet, and she took photos, and we took photos, and I cuddled him some more and wished he could have been born healthy and remained alive. And then... .what more was there to do? I had said my 'hello's and all there was left to do was say my 'goodbye's ... and the hardest thing was realising that I had done everything I could do, that there was no more experience to be had... that I could hold him for longer and take more photos – but they would always be photos of the same thing and I already had them. And although I could hold him for longer and loved him with all my heart, the tiny body in my arms was cold and would never be warm and alive. You can't hold that for ever. And so the time came – maybe half an hour? – to put him back in his basket and the nurse came and took him away. And I said my goodbyes.

The good bits (yes, they are there):

My friends at work were very good at listening when I needed to talk. They never appeared shocked when I wanted to talk about the minute details, they just hugged me when I was sad and sat with me when I felt alone and isolated.

Tim and I walked to the hospital canteen. We talked on the way, and I said 'You know, in a strange way, it feels good to feel this bad. To feel some emotion with such intensity that you know you are alive. I am feeling pain in a place so deep I never even knew that place existed. And today I know that place is there and it is alive and it can feel'. That is good. The only way you will understand that is if you experience it.

I think we all made a decision in our family during this time that 'there are no rules' ... It may even have been said out loud, I don't recall. But the essence of it was this. 'That there is nothing that 'we don't talk about' – if you have something to say, then say it; be honest about what you feel. It is ok to laugh, to cry, to be deeply sad. Even if no-one else is at the time. Be honest to yourself about how you feel about this. And, if your honesty coming out upsets me, or I am hurt, or I do not have the strength to cope with it right now, or I just want to be on my own, or I am finding you insensitive, I will try and be honest in return, and tell you'. There were no rights or wrongs in what we should or shouldn't do. I think underneath everything we all knew that if we DID hurt each other, or caused pain through being insensitive, or caught someone at a bad time, that no offence was intended and it was just a whole lot of people all trying to deal with some raw pain all at the same time. That is tough. Be gracious with each other – because they are being gracious with you.

At David's funeral I was amazed at how 'together' we were... I didn't find it difficult, I wasn't emotionally overwhelmed, in fact, quite the opposite. I felt very together and calm. I had done the vast majority of my crying in the three weeks previously. What I hadn't realised was, that for many members of our wider family, none of this had seemed 'real' until the moment they sat in the church and watched Tim walk in holding a 16-inch coffin in his hands. There were many people who cried at that point, because till then it had not seemed real. I, who had lived this nightmare in all too tangible a reality for the last 8 weeks (five weeks between diagnosis and David's birth, and his funeral was three weeks later) realised that I was well placed to comfort and support family and friends who had not understood what this was really all about. I did not find it hard that they hadn't understood. How could they? I'm not sure I understood myself, really. But it felt good to be able to 'walk people through' a hard and painful occasion, borne out of the experience that said 'I have already been here and done this, let me hold your hand and help you understand you are not alone'.

I think I have learned to be more honest with people – especially my close family– about how I feel. I have learned that your friends, even people you do not know very well, generally respond well to seeing someone who is in pain and has little idea of how to control it or what to do. These are good things. All my friends and colleagues were very supportive, even when the situation 'caught me out' and an overflow of emotion took me unawares. And it will. In fact, even committing this to paper is pretty soul-wrenching...

I even list 'pain' as one of the good things. David was born almost 2 years ago and I still think of him very often. But the rawness of the pain of loss subsides into what I call a 'bittersweet' feeling – yes it is still pain, but the familiarity of it becomes almost warm and comforting in a strange way. I feel the pain of losing my first nephew and it tells me I am alive, and can feel, and it tells me I loved him and he had a huge impact on my life. It is good and positive to mourn the loss of those things because loving someone and allowing them to impact your life are both positive things.

I remember David in my own way. On my wall I have a photo frame of David and his short life. It has pictures of his ultrasound scans, and photos from when he was born and from when I cuddled him in the hospital. I have pictures of his grave and of him in his coffin, with his Mum and his big sister (she was 2½). And I have the words of a song that I sang at his funeral. I treasure that frame. It is the only tangible thing I have. I look at it often and replay some of the moments and feelings. Perhaps it is a way of making sure he stays 'real' in my heart.

In conclusion, if you, a sideways stakeholder, are looking for ways to cope with this shocking and unexpected diagnosis, then I would simply say this: Allow this to be part of your normal life. Let yourself be, and feel, and do what you feel you should. Listen to your heart, and your deepest sobs... feel the pain, and treasure it... remember it, record it – because ultimately those feelings (and, if you are lucky, some photos) will be everything that you have to remember 'your' baby.

And if you are looking for ways to support your family or close friends who are trying to deal with this as best they can, be honest with them, and open. It IS part of normal life for them, now – perhaps not a 'normal' we would choose, but everyday life all the same – if you have questions, ask them. If you're not sure you've picked a good time, say you're not sure! And if they respond badly, or out of a pain they can't handle 'right at the moment', then be gracious and realise they do not mean to hurt you. If that is difficult then give yourself a bit of space to take a deep breath, collect your thoughts, and remind yourself that you love them and want to help them as best you can.

Rachel, aunt to David and Jonathan

David's story



Last updated May 3, 2019