How To Support a Family When Their Baby Dies

Following on from last week’s post ‘Thomas’s Story’ I was emailed by a couple who wanted to share how they were supported when they lost their baby in 2012. They experienced the unthinkable when just only one hour after their son was born, he tragically died. They have written this post as a guide to help and support friends and family in these circumstances.

holding hands

“Not all pregnancies have a happy ending.  I’m sure most people know this, we certainly did.  But it´s one thing knowing something in principle and something else entirely to live through it.  We read the leaflets and had the hypothetical conversations that I’m sure lots of couples have when they approach the end of a pregnancy: “what will we do if…?”.  But nothing could have prepared us for the death of our first son, an hour after his birth at 41 weeks.  No warning, very little explanation and absolutely nothing we could do about it other than start the long and painful process of grieving for our beautiful, perfect boy.

But, unlikely as it may seem, we look back on that time with gut-wrenching sadness, but also a lot of joy thanks to the amazing kindness of many, many people.  We now know that every single day in the UK, 17 babies are stillborn or die shortly after birth. Most of these are completely unexpected and often go unexplained.  Sadly, with statistics like that, the chances are that most of you who read this blog will be touched by the death of a baby at some point, either directly or indirectly.  We have chosen to write about some of the ways in which people helped us in the hope that, if faced with a friend or relative who has lost a baby, others may be able to offer help and solace during what may be that person’s darkest days.
Be there. These are likely to be the worst times your loved ones will ever go through so the most important thing is to be there, in whatever way you can.  Visit, call, send a message, whatever you can manage and whatever you feel is appropriate.  Nothing is worse than saying nothing, ignoring what´s happened and waiting until ‘things get better’. Don´t be afraid to cry, it’s a sign that it has affected you too and that what’s happened has sent ripples far beyond the immediate family. One of the most horrendous feelings is the sense that whilst their world has completely collapsed, the rest of the world has carried on as normal.  People get married, have children, go to work, get on the bus, take holidays. All of this ´normality´ is really hard to watch and even harder to be a part of.  Anything you can do to reach out a hand of support could help.
Listen.  Nothing makes sense to parents who have lost a baby and every minute of every day seems like an eternity as they cycle through the feelings of anger, confusion, denial, depression, total isolation, questioning…  Everyone worries about not knowing what to say or, worse, saying the wrong thing.  The truth is, there’s no right thing to say.  The best thing to do is listen.  People want to tell their stories and bereaved parents often want to talk about their baby.  It helps to make it real and tangible: that baby is a person, he or she had a life – however short – and talking about what happened can help enormously. Having said that, everyone is different and it’s important to be sensitive and try to respond to the signals coming your way.  If they don’t want to talk, don´t force it, though don’t read this as a sign that they may never want to talk about it.  One day they may talk non-stop, the next they may not want it mentioned at all.  Grief is not neat, linear or organised, you just have to do your best in the circumstances and try to read the situation on a minute-to-minute basis.  And whatever you do, avoid cliches like “time is a healer”, “it was meant to be” – these are most definitely not helpful.  The death of anyone shouldn’t be bundled up into glib soundbites, least of all a baby.  Yes, time passes and over time the rawness eases, but in the early days the depth and darkness of the hole parents find themselves in is absolute.  And in no world is it ´meant to be´ that a baby dies unexpectedly.
Bring food. Don’t stay too long. Just like any new parents (and yes, your loved ones are parents, even if their baby is not with them), the day-to-day responsibilities of life can become impossible to keep up with.  Buttering a piece of toast can seem like an insurmountable challenge, never mind cooking a meal.  If you can bring food, it will be so welcome but don’t expect to be invited in.  Your friends will be grateful but, when grief takes over, there’s little room for pleasantries or thank yous.  Those will come later.  If you are invited in, don’t stay too long.  Again, try to read the situation and remember that it’s about THEM, not about YOU.
Be proactive.  The utter shock of losing a child is all-consuming and can leave parents with little or no motivation.  This includes the motivation to do things they would normally enjoy and, more importantly, the motivation to ask for help.  Even that is too much effort. So, where possible, take the lead and take care of any practicalities you can: washing, loading/unloading the dishwasher, running errands etc.  If they have older children, perhaps offer to look after them for a few hours.  Also, taking on unwanted admin such as cancelling baby-related plans (NCT memberships, deliveries for the nursery etc.) or offering to call other people who the parents don’t have the strength to relate their story to in the immediate days and weeks.  Another brilliant thing is to offer to accompany your friends to appointments.  These can be scary and often have to take place in the very hospital where their baby died.  A friendly face can really help.  Again, offer but don’t expect a yes.  It’s a question of offering helpful options rather than imposing yourself on the situation.
Inform yourself. There are charitable and professional organisations that support parents who have lost a baby. SANDS offers emotional support to bereaved parents but also has information for family and friends that can help to explain how the parents may be feeling.  The more you know, the better prepared you’ll be.  Cruse Bliss and Winston´s Wish also offer support and information.
Go the distance. Grief doesn’t go away, it doesn’t even get much easier.  Bereaved parents will forever remember the child(ren) they’ve lost and that space can never be filled. Every birthday, anniversary, Christmas, Mothers’/Fathers’ Day will bring back very painful feelings.  During the early weeks and months the support pours in, but as time goes on, that wave of support recedes and the parents are left feeling as if they´re alone in a world that now feels very alien, needing to ´move on and get back to normal´.  This can be the hardest time for parents and for friends too.  Again, no-one wants to say the wrong thing and avoid upsetting the parents all over again.  In reality, nothing is more upsetting than the feeling that people have forgotten.  Do your best, in a sensitive way, to show your friends that you haven’t forgotten their baby and he/she will always have a place in your lives.  Tread carefully because everyone will have their own way of dealing with their feelings but you could think about acknowledging anniversaries, raising money for a relevant cause, or simply continuing to talk/ask about the baby if it feels appropriate.
We miss our son every single day.  We should have a noisy, boisterous toddler tearing around our house, instead we have the photos we proudly display on our mantlepiece, the stretch marks I have on my tummy, the tile with his tiny footprints imprinted on it, the little hat he wore during his very short life, and of course the heaviness that we carry with us every day.  But he is also with us in the box brimming with cards and messages that we received following his death, he is in the new friendships we’ve forged with people who truly went above and beyond in their support for us and mainly in the firmly held belief we now have that, although there are inexplicably awful things that happen in the world, there’s a tremendous amount of goodness too and we’re so proud that our precious boy has given us that gift.”

Thomas’s Story

A few weeks ago I received this email from a woman in The Netherlands.
“A few days ago I came across your blog for the first time and I have been reading birth stories and blog posts almost nonstop since then. I am mother to a gorgeous three year old girl born at home and to a baby boy who passed away at 39 weeks of pregnancy. I am now 24 weeks pregnant with our third child, a scary time! My second birth story is quite different from my first for obvious reasons. Would you welcome a birth story where someone has to give birth to a stillborn? Or maybe a birth story about the baby being born after that? I guess I am just trying to break the huge taboo that is the death of a child. No one wants to know or hear about it. And then all of a sudden it happens to you and you don’t know what’s going on.”
This emailed made me stop. It made me think that this woman’s birth story is just as important as all the other stories I publish on here if not more important. So here is Thomas’s beautiful story of his arrival into this world. It may be upsetting to read and there are two photos included. Thomas’s mother wanted these to share the story. As always full consent has been gained to publish this.
‘I wake up on Monday morning thinking the baby in my tummy is awfully quiet. I poke and prod a little but get no response. I start to panic a bit but tell myself I am overreacting and being a typical worried mum-to-be. But the feeling that something is off won’t go away. Thinking back I can’t seem to remember when I last felt our little boy move. Was it last night in bed? On the sofa? Yesterday afternoon? Morning? And all of a sudden I can’t remember anymore.
We call our midwife and are told to come in for an extra check. We don’t have to wait and are able to walk in immediately. I lie down and she does the scan. We can’t see the monitor but our midwife is very quiet. When I tell her she is making me worried, she replies saying she is worried too. She tells us she can’t see a heartbeat. She tries the Doppler but this also remains quiet. 
We are numb. We don’t even cry. Our midwife can’t officially tell us that our baby boy is dead but she leaves us in no doubt. We are sent to the hospital to be checked by a doctor. She confirms what we already know, our son is no longer alive.
I am 38+5 weeks pregnant. I am carrying a fully grown baby in my tummy. A baby who was so ready to be born in a few days, to come home with us. Instead, we are told to come back the next day to have an induction so I can give birth to our dead son.
We go home in a daze and pick up our two and a half year old daughter from school. It breaks my heart that I have to tell her that the baby brother she has so anxiously been waiting for, will not ever be coming home with us. The rest of the day we alternate between crying and staring into space. We pack a hospital bag because we had left it until the last minute to do so. We were so counting on another smooth home birth that an induced hospital birth never featured in our plans. We don’t know what will happen tomorrow and how things will progress. 
All night we lie awake staring at each other. Our daughter sleeps in the middle, we can’t bear to tuck her into her new ‘big sister bed’ in the shared bedroom downstairs. I don’t want to think about it too much but my tummy is quiet, way too quiet. All hope is gone.
Early the next morning we take our daughter over to my cousin’s house and I feel sad because I don’t even know when I get to see her again. We drive to the hospital where we meet my mum before we go in. The day which we have been waiting for for 9 months is here. But we feel no joy. We walk through waiting rooms full of pregnant women eagerly anticipating the births of their children, we hear babies cry behind closed doors. And we know things will never be the same.
The nurse explains what will happen that day. But she can’t answer the most important questions in my mind: how long will it be? What will it be like?  
Around 9am the doctor comes to check me and insert the first tablet. She tells us I am 1cm dilated already which is fairly good news because it means my body is showing signs of being ready to deliver our baby. She informs us she will be back in 4 hours to check on me again. I start to panic. Another 4 hours? Won’t I be in labour by then??
Over the next few hours we just sit in our room, walk around outside for a bit and I feel nothing. I am afraid we are in it for the long haul and feel almost guilty for wanting to get this step over with. Finally at 1pm the doctor comes back and drops another bombshell; a very small 2cms dilated max. Another tablet and 4 more hours of waiting to go. 
But within half an hour of the second tablet I start to feel some minor cramps. My mum asks the nurses to set up the epidural. Why wait? The doctor has already explained to us that in these situations they tend to be very lenient on requests for pain relief. Epidurals are not given very easily in The Netherlands and I would normally never have wanted one. Even now, I feel almost guilty towards our baby boy but I know it’s silly. I don’t know how long this labour will be, but I do know that our time with him will be so very short and I will want and need all my strength for that moment. 
The epidural is quite painful but fairly quick. I am no longer allowed to leave my bed. I slowly feel my legs and feet going a bit warm and tingly. The pain from the contractions is hardly noticeable anymore. I can tell something is happening but it doesn’t hurt.
Our own midwife stops by to check on us. She will come back for the birth.
It is around 3pm when I tell the nurse that the pain from the contractions is getting much stronger and my legs are no longer tingly. I can move my legs perfectly as well. They up the epidural but it has no effect. 
At 3.45pm the day shift is going home and the nurse comes to say goodbye and introduce her colleague. The hospital midwife for the evening shift has also arrived and comes to check how we are doing. I feel devastated when she tells me I am 2cms dilated, maybe a very small 3. She tells me she will try to break my waters to help things along a little bit. It takes her a while and quite some prodding but eventually she manages. A flood of brown amniotic fluid comes out and the midwife explains that the colour comes from the meconium our baby passed when he died. It feels like a knife in my heart to hear this and to realise that my little boy was under so much stress. I am heartbroken to think that he was fighting for his life without me even realising it.
The midwife gives me one more extra dose of the epidural but it makes no difference anymore. I am having very strong contractions coming close together and I am in a lot of pain. Just after 4pm my husband asks the nurses to call our own midwife because he thinks our baby will be born soon. The nurses tell him it will be a while longer as I was only 2cms dilated just now. But my husband recognises this stage from my previous birth and insists they call our midwife.
I can’t do anything apart from concentrate on the contractions. Of course I was in pain when I gave birth to our daughter but I cannot remember this extreme pain, this totally overwhelming feeling. I tell myself it must be the emotional impact of this labour.
Our midwife arrives at 4.30pm but I hardly notice. I am completely consumed by the natural forces that are taking over my body. I need all my strength to get through this. I feel sick, I throw up, I cry and hyperventilate all at the same time. I can’t do this, it is too much. I really start to panic when I can’t breathe and I shout that they need to do something, anything.
The midwife decided to check me before considering any other type of pain relief. To everyone’s shock, and relief, I am fully dilated just before 5pm and can start pushing. Just like with our daughter, I don’t feel the urge to push yet. It’s too late to get any other pain medication and I am now almost hysterical. My own midwife is standing by my head talking to me nonstop. “The head is there already, you can do this, he is almost here, honestly.” I call out a few times asking how much longer but then I can feel it myself.
A tiny little head that slowly drops between my legs. I can do something with the pain from the contractions now and that is a huge relief. Only a few minutes later the head is born and I can feel the rest of his body slide out. At 5.01pm our son Thomas is born.
Because I gave birth sitting on my knees on the bed, I can’t see him immediately. My husband is crying and telling me not to look. I want to turn around and see my son but I am getting scared. What is wrong with him? 
But nothing is wrong with him. He is perfect. He is so beautiful and the spitting image of his big sister. He is still warm from my body and has ten lovely little fingers and ten lovely little toes. His little pink cheeks and so soft and his lips are red. It is such a beautiful, sad and scary moment. I hold him and look at him. I recognise him. And as perfect as this little boy in my arms is, something is also very wrong. He is no longer alive. 
I hold him and admire him. I want to remember everything about this moment. The time we have with him is much too short. His skin is a little broken in places and his little head is quite soft. Slowly his hands get colder and instinctively I pull the blanket around him.
The placenta takes a little while to come but then that scary moment has also passed. Does anything look wrong? But the umbilical cord and placenta look just as they should. 
My mum very gently and tenderly washes her first and only grandson. I sit next to her on a chair and together we dress him in his gorgeous clothes. The clothes we so lovely chose for him. We carefully wrap his fragile head in a tiny hat. Then we wrap him up in his own blanket and my husband gets to hold his son for the very first time. An overwhelmingly sad and proud moment. 
Our daughter is on her way to the hospital to meet her little brother so I have a shower while I can hear my husband crying and whispering to his newborn baby boy.
When our daughter comes in she is a bit confused. She touches Thomas carefully and tells me he is cold. We explain that he is feeling nice and warm in his blue outfit and his warm blanket lying in daddy’s arms. She notices the bruise on his eyelid and pokes it with her little finger. She is not very impressed by this new brother that doesn’t even move. 
I sit back on the bed and hold my child again. The child that was already such a big part of us, the child we so very much wanted in our lives. He is so loved already by everyone. And yet the time has come to say goodbye. It seems an impossible task. I look and look, try to absorb every detail. I want this moment to be etched onto my memory. Because even though there is an all consuming sadness in me, I also have a beautiful boy in my arms. My child, our daughter’s brother. I open the blanket and kiss his small hands with those tiny fingers and blue fingernails. I stroke his cold little feet and we take picture of all these details that we never want to forget. 
To help our daughter be involved in what is happening today she is allowed to help make hand- and footprints on small pieces of paper. She loves being able to put green paint on a small baby. The nurse makes some handprints and then, very carefully, I make the final footprint with his cold little foot that I will carry in my heart forever. We clean him up and put his socks on.
And then the inevitable moment has come to say goodbye. We take Thomas downstairs ourselves and my husband puts him in a little white coffin. We ask that they leave the lid off. My husband carries the small coffin to the car and they drive off to take him to the funeral home. My heart hurts more than I ever thought possible but then suddenly my daughter starts to cry uncontrollably calling out for the baby. And I give up. I can’t be strong enough for this. I feel the enormity of this loss, of the pain. This pain that is not only so overwhelming for me, but also for my wonderful little girl. And I will have to carry that with me for the rest of my life. 
Then, only 4 short hours after giving birth, we are back in the car. Back to being with the three of us. The fourth member of our family no longer a physical presence in our house, but a very real one in our hearts. My tummy is empty, no longer full of expectation. Yet my heart is so full of hurt. I feel the loss within my very soul. But I am also overwhelmed with a sense of guilt. Guilt towards both my children. I have been unable to keep them safe.
Our son Thomas is cremated several days later. We talk about him a lot but the pain does not get any easier. We miss him every day. And for the rest of my life he will have a very special place in my heart. A place where I will keep him warm until the day I die.’
DSC02119 (2) DSC02156If you have been affected by anything in this story please contact SANDS for more information and support.