York Baby Loss
In February I was honoured to have been asked to speak the student midwives at the York Baby Loss Conference. A video recording was made of my presentation which is available for you to watch below, as is my presentation in writing.
Hello. My name is Kirsty and before I really begin, I just want to thank you for taking the time to be here today, baby loss is a subject that is very close to my heart. I am going to start off by sharing a little of my background and how I ultimately became part of the baby loss community.
In 2012 I completed my training and found myself in my first qualified midwifery job in Surrey. It was incredibly nerve wracking but exciting as it was something I had worked so hard for. I felt competent enough to work on what I had learnt during my training and felt I would be able to support families through the amazing time of childbirth.
However, I quickly realised that a massive part to my training had been neglected. Baby loss, bereavement and death were all words that I had rarely heard during my training and were all subjects in which I had very little experience. I knew of the subject of stillbirth but I wasn’t familiar with it. We’d had just a single lecture on stillbirth during university and during my training I had been sheltered from caring for the parents of babies who had died.
But it seemed that my lack of experience didn’t matter. As between the years of 2012 and 2016, I looked after many families who had lost their babies. I always tried my best; I learnt as I went and used my own assumptions of loss to help navigate what I did in those situations. But did I know that I was doing? No. Did I feel competent with what I needed to do? No. Do I wish I had done things differently? Yes.
In 2016, I found out the hard way what bereavement care really needed.
So flashback to August 2016. My husband and I were expecting our second child. My daughter, Eleni, had been born the year before after an uneventful pregnancy and labour. She was healthy and so we had no reason to worry with our second child. Everything seemed to be ticking along just fine.
We went ahead to our 20 week scan, excited to see our baby again and find out what we were having. I lay down for my scan and remember thinking how it seemed to take awhile but I wasn’t worried. And then the sonographer said ‘We have seen an abnormality with your baby’s heart, it looks bigger than we would expect and the heart rate is a little slower.’
I was worried. But I still didn’t really think something was horrendously wrong because bad things never actually happen to you, do they? So we were taken into another room where the midwife made us an emergency appointment at the Evelina heart hospital in London, for 2 days time. She told us not to worry but they couldn’t give us any indication as to what was wrong; all we could do was wait to see the specialist.
We went home and straight away I got out my Doppler and listened to my babies heart beat.
That will never get any easier to listen to. Now I was terrified. My little girl’s heart was beating at roughly 60bpm. I don’t remember much more of that weekend.
Monday came and we went to London. Denial or hope was in full force. I didn’t want to believe that anything could be seriously wrong but this time I lay down for my scan, I gripped my husband’s hand and watched my consultants face, trying to analyse every sharp inhale.
After an hour scan in silence we were taken into another room to be told that our baby daughter had complete heart block, a condition where the electrical signal between the ventricles and atriums don’t work. Blood was flowing in to my baby’s heart at one rate and leaving at another, which is why her heart rate sat at 60bpm. It was also suspected that she had pulmonary stenosis and a hole in the heart. Being only 20 weeks, delivering our baby wasn’t an option. Termination was offered but we decided to go on and see what the next scans would tell us, as we didn’t feel like we had enough information. There was a chance that she would deteriorate but there was also an 80% chance that she may continue at the level she was at. The goal back then was to get to 33 weeks and deliver via c section.
Over the next four weeks my stomach grew whilst we had scans weekly, some positive and some less so. It was discovered during this time that I carry Anti-ro and Anti-la antibodies. Horrid little antibodies that were continuously attacking our baby’s heart, causing the complete heart block and slowly killing her. These antibodies are only picked up if specifically tested for or if the mum is already known to have Lupus or as was found with me, Sjogrens syndrome. As the odds of having these antibodies and affecting a baby are 1 in 20,000 it made the suspected outcome for our baby incredibly hard as consultants typically see this once every 10 years and so what results they did have was limited.
At just over 24 weeks we were delivered the news that our baby’s heart had started to slow further. We spoke to 4 difference consultants who all said that our baby was not going to survive pregnancy. My antibodies had caused irreversible destruction to her heart as the muscle was breaking down. She was dying.
We decided to take on a life time of pain by interrupting the pregnancy to avoid her dying a slow and lonely death. I didn’t want her to pass away without me being aware. It was the only thing that I could do for her, to give her a peaceful death and be mentally there with her. At just under 25 weeks I had a medical termination which allowed for my daughter to pass away peacefully whilst all she would hear was the sound of my heartbeat and feel the warmth of my love.
2 days later, on the 7th September 2016, after a 23 minute labour, my daughter Holly was born still. My heart exploded with love and broke with grief as my world forever changed. We had 24 hours in hospital with Holly, before saying our goodbyes. During that time, we made memories, we cried and we told Holly how much we loved her.
And then began the rest of my life, my forever after Holly, learning how to live without my daughter. So I threw myself into planning her funeral, I started blogging, I began raising money, I started sharing pictures of Holly, talking about death, speaking at conferences and breaking the silence surrounding stillbirth.
I share openly and honestly because things will never change it we skirt over the subject of death because it makes us feel uncomfortable. I promise you that however uncomfortable the subject of death makes you feel, it is 10 times worse for the parent who has to live with it stamped into their lives. Things will never change if we keep sugar coating death as a baby born sleeping in a bid to make it sound less traumatic and things will never change if we don’t speak up and stand up for stillbirth to given as important a priority as any other birth.
So that is why I am here, because Holly’s life and death hasn’t ended. She has shown me how important it is to get bereavement care right. We as bereaved parents only have one chance of making memories with our babies but we as midwives have that chance to assist in giving the best experience possible.
So what have I learnt about bereavement care? I wish it was possible to tell you in a single presentation, what care we should be giving. But the reality of that is impossible, as every parent, every baby and every grief is unique. So instead what I think we should do, is be aware of ALL the opportunities that are out there so that we can give the parents as many options as possible when supporting their grief.
It’s the small things that can make such a difference when you are going through something so traumatic. It’s being met as soon as you walk through that labour ward door by the bereavement midwife and whisked into your room so that you don’t have to bypass any ladies in labour. It’s having a midwife support you through labour because he or she understands that it is still a labour. I was offered a birthing ball and classical music and I am so grateful for that. I didn’t have to focus on my own silence and pain. In amongst the mess of our baby dying, I was still able to experience a beautiful labour and be able to keep positive memories from it.
Holly was delivered just like any other baby. My husband cut her cord and Holly was immediately brought up on my chest. Tabitha, our wonderful midwife then went to call the hospital medical photographer to come and take some photos. We were lucky enough to deliver at a hospital that offered the services of their own photographer. Tabitha understood the importance of recognising how quickly a baby changes once born. Now I have the most beautiful pictures of Holly and exactly how I remember her, before she had started to deteriorate.
I also hadn't realised how quickly Holly would become so fragile. In hindsight I wish I had cuddled her for much longer than I had. After our first few initial cuddles and asides from when the both the medical photographer and the charity photographer came, we didn't hold Holly again as it was clear how delicate she was becoming. I think any parent would tell you how they wish they could have just one more cuddle with their baby. So encourage the physical contact early on, whilst the parents are still able.
Holly was cared for just as any live baby would have been. We had scales brought into the room and so we were able to weigh Holly ourselves and take photographs. I am sure most of you have seen precious memory boxes that are given out to parents when they have lost their baby. They are boxes filled with all sort of things to help you make the most of your time with your baby and be able to go home with some special memories. When I have been at work, looking after couples who have lost babies I too have given these boxes out and almost worked through every item to help assist the parents care for their baby. But what I hadn’t ever done was think about what else I could offer. When dealing with something so hard, it’s often difficult to take a step back and think of others things that we can do to help these parents. Whilst we did do all the things inside the box, they also went out of their way to do so much more. Our midwife cut up a nappy to make it small enough to fit our Holly. It was a gesture that was so incredibly thoughtful and exactly what I wanted as who would want to get there baby dressed without a nappy?
The memory box included a little box in which to put a small cutting of your baby’s hair. Holly had very tiny black hairs covering her head but instead of our midwife assuming that we wouldn’t be able to get some or assuming that the cut of hair was only for older babies, she took ages with us, delicately fluffing up Holly’s hair with so much care and eventually cutting a few locks for us to keep. We will always have that piece of DNA with us forever.
It’s having the midwife know the paperwork inside out so that she or he is not flustering in front of you or unsure whether your baby is entitled to a funeral or hospital cremation. Its having the midwives know what you need to do to register the birth and death of your baby instead of sitting there trying to understand how you need to arrange that as well as grieve for your child.
It’s having a midwife assure you that your baby will be looked after once you’ve left hospital. Leaving Holly will always be the hardest thing I have ever had to do. But my midwife told me where she would be at all times, I was given numbers on whom to call and I was reassured from the bottom of her heart that Holly would be looked after well, just as if she was still living. If I hadn’t known where Holly was, it would have made leaving her so much harder.
It’s being aware of wonderful organisations of who can bring more ways to make memories. My sister had arranged for the charity Remember my Baby to come and take photographs of Holly, all free of charge and they are some of my most precious pieces of Holly.
It’s not letting your own assumptions cloud would options are given to the parents. For example, as a midwife we had routinely always given medication to prevent lactating. I delivered Holly at a different hospital to where I worked but immediately asked for the medication as that’s what I had known and thought what you did. But in hindsight I really wish I hadn’t let my milk dry up and actually gone on to keep some and have it made into jewellery or something similar. I would have loved to have kept something else physical from Holly’s pregnancy. So what you expect or currently know as a midwife isn’t always what the parents want so be open to other ideas.
A massively important thing to remember and it sounds obvious but don’t forget the dads. I think sometimes when we already feel nervous, awkward, unsure or unprepared for a situation such as stillbirth, it can be hard to focus on what else is going on, other than what is physically happening to the mother. Again for example, we had Holly blessed which was my husband request as I am not religious. But the Father barely acknowledge my husband, he spoke to me which was great but I felt awkward and sad for my husband, it felt as if he mattered less? And I am sure it’s something which is never intentionally done but it is something which is just so important to not be neglected.
Our midwife understood that there are no rules when you have lost a baby. You quite simply do as much or as little as you like but knowing what are opportunities are there for you to do. She was completely lead by us but absolutely knew what she was doing. On a day which was in most aspects was the worst day of my life, she managed to still bring some love and light in to the world.
The most important part of all of this was that Holly NEVER left our side. The hospital provided cold cots which meant that everything was done with us watching and with our consent. If able, Let the parents be involved in every aspect of their baby’s care, if that is what they wish. There is no reason why they should miss out on making these memories. Leave any assumptions you have and ask the parents if they want to dress their baby, have skin to skin cut their baby’s cord, do the handprints and footprints themselves. It’s being given all the opportunities which can mean so much for these parents.
I wish (in the kindest way) that I had experienced more as a student midwife. To have the opportunity to watch and listen to the couple and understand what your gut instinct is telling you they need. I truly believe that looking after bereaved parents requires an additional set of midwifery skills to looking after a live labour and I hope that in sharing Holly’s story I have given you some ideas as to how you can help when you are the midwife in that situation. It is an incredibly special job to be able to share a parent’s grief and hold their most precious memories in your hand which is why I feel the need for compulsory support and training once qualified. Just give them the time that they need, the trust in that you will look after them and the knowledge that they need to get through this time. There is no right or wrong answer in how they chose to spend their time with their baby as there is no right or wrong way to grieve.
So I want to share just a few of my own bereavement experiences as a midwife obviously before having Holly.
Shortly after I qualified as a midwife in 2012, I was given the task of looking after my first couple who were losing their baby at 19 weeks. I did feel unprepared. Looking after this couple about to lose their baby, I wasn’t sure how to speak to them, I wasn’t sure what they wanted from me or how I should act. I wish I knew then, what I do now.
When you lose a baby, your world falls apart. You don’t have much positivity left inside you but going in to deliver your baby, you are still so in love and wanting to meet your child. Tabitha spoke about Holly like she still meant something and understood how in a time of despair, you can still be excited to meet your baby. I think back to the couple I looked after when I first qualified, if anything I think I probably mentioned the baby as little as possible, I didn’t know what to say and was probably worried to upset them more. The reality of this is that nothing is going to upset you more and for most all they want is to parent their baby in the short time that they have. Your baby is constantly on your mind and so someone else mentioning them, isn’t going to hurt you more. If anything it makes you feel comfort and relief in hearing your baby spoke with so much respect. Take the lead from them, if they want to talk then talk, if they don’t then don’t. Both are absolutely okay and both are absolutely normal.
But I couldn’t see this at the time.
When the baby I was looking after delivered, the parents didn’t want to see her. So I took the baby into the little side room and did the footprints and handprints but felt like a failure. I hadn’t pushed the couple into seeing their baby and I made sure they knew the opportunity was there. But I felt like a failure as I imagined if it was me going through it, I would want to see my baby so maybe I hadn’t supported them enough or done my job properly to make them change their mind.
My own assumptions had clouded that actually this was perfectly right for this couple. They came back the following day and met their baby. They just needed time and time simply can’t be forced when you have gone through something so traumatic. I hadn’t failed, I had done the best I could with the knowledge I had but I hadn’t taken in to consideration that everyone is different. There are no rules when you lose a baby and you can’t assume what is normal as losing a baby is so very abnormal. Let the parent’s guide you with the care that they need but do talk about their baby, let them know it’s okay how they are feeling, listen to what they need and take photographs as one day these parents may decided they do want to meet their child.
A few years later, I had a shift on labour ward which has stayed with me. I was looking after a low risk labourer and a lady labouring her 15 week still born baby. I was flitting between two rooms, being excited and happy to being quiet and respectful. It haunts me to this day that I couldn’t have been with both of them when they delivered. I was with the live birth when the other lady delivered her dead baby. She must have been terrified. I had tried to tell my shift leader that I wasn’t able to look after the both of them but we were short staffed and I was left without a choice. I was forced to prioritise the needs of the ‘low risk labour’ over the needs of the stillbirth but now I understand that what that means is that the parents who had a live birth, went home with a good experience and many more memories to make whilst the other parents probably started their grief and the rest of their lives in a more painful way than it should have been. Life matters but so does death. In addition, there was no support given to me, a midwife whose emotions were being conflicted. I was then given another labouring stillbirth to look after that day and come home time I was absolutely depressed and beaten. In fact, I requested to move to the postnatal ward after that. So look after each other and offer support if you know your colleague is having a difficult day.
I don’t have the answers for when the shifts are short staffed and you find yourselves in these situations but I want to shout that it’s not acceptable. It’s frustrating because these shifts just shouldn’t happen and it’s devastating that far too often, the stillbirths are the lesser priority. I feel that there is a massive ignorance to the impact that a poor service of support during stillbirth can have. It’s almost as if bereaved parents matter less because our babies are already dead. It needs to be turned on its head and acknowledged that we need the support because our baby is dead and what you can do is make yourself as knowledgeable as possible and experience as much as you can now.
During midwifery training it can be very difficult to get the opportunity to look after bereaved parents. When these loses do sadly come about, often students are sheltered from par taking in the care or they are busy needing to fulfil other parts to their portfolio, which of course are important to. While of course you can’t ask for more bereaved couples to walk through the door and neither would you want to, I do feel that there is still so much that can be done to help you feel more prepared in that situation. Since losing Holly the need for more training and awareness for current capability really has become apparent. What strikes me is that when going for midwifery job interviews, there are no questions asked on how capable you are of looking after these couples going through loss. There is no discussion on what previous experience you’ve had and that terrifies me. It simply shouldn’t be assumed nor should it be ignored. The experience of losing your baby as a parent is so precious that I believe exposure and training to be absolutely necessary. I think it is so important that if as student you haven’t been exposed to pregnancy losses then this needs to be addressed and further training made compulsory once qualified. I feel this training has to involve multiple organisations as you are experiencing today and for these sessions to be made just as important as other days in your mandatory training. I truly feel that looking after a grieving couple is more than the precious skills it takes to be a midwife. It is being a midwife who can counsel people through the first days of grief by knowing what to say. It’s being a midwife who understands the needs of someone who has lost a part of themselves. It’s being a midwife who has gained as much insight into baby loss to allow them to support those parents as much as what’s needed. As a parent to a baby who isn’t here, I really have seen this from both sides. I have felt completely out of my depth looking after these couples but now I understand how important it is to get the time with these parents right.
I think everyone worries about saying the wrong thing to grieving parents, we’ve grown up in a society where death just isn’t spoken about. But what I want to say is don’t worry and over think what to say. Just talk to us and listen to what we need. What is key is having knowledge of opportunities that are available to the parents in their area to assist in their memory making. They might want to do them all or they might not want to do any. And that is okay. By you immersing yourself in the topic of baby loss you are already doing your best.
So what next? I was very lucky to fall pregnant about 3 months after Holly died. We had a very difficult pregnancy as my baby had a 1 in 5 chance of developing heart block as Holly did and we didn’t get the all clear until 28 weeks into my pregnancy. But Holly gave us a beautiful gift and that is her brother, my rainbow Kobe, who was born in August last year. He doesn’t take away the pain of losing Holly, what he does is just make a little portion of my grief a little lighter. His arrival brought about a new chapter to my grief as I see how much Eleni loves her brother and would love to have her sister here too.
So whilst juggling grief, a newborn and a toddler I have left midwifery and am now focusing on my babies and supporting others with bereavement care when I can. Its bittersweet that Holly’s death has brought me here but wonderful that her life and death has so much meaning and her journey certainly hasn’t yet ended.
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On the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block.