As an obstetric doctor or midwife, it’s always such a privilege to share in the excitement of new life coming into the world.
But every so often you also witness the devastating lows, when life is lost too soon.
Nine babies are stillborn every day in the UK. This means they have died after 24 weeks of pregnancy or during birth.
There’s no training for healthcare professionals that can really prepare you for this. The pain you feel will never come close to what families are feeling, but you feel it nonetheless. You desperately want to change the outcome but you can’t.
I’m not afraid to admit I have sat and cried with families. The week that my first baby was due, I met a family who were expecting their third child. They were concerned that the baby had not been moving as usual. As we went through the consultation, they asked me if I had any children. I explained that we were expecting our first baby any day now. They told me it would be the happiest day of my life.
Just hours later, I had to tell them the dreadful news that their own baby had lost his life. We sat and we cried. It may not seem professional but we are all humans after all.
My daughter was born later that week and they were right, it was the happiest day of my life. But I thought about that family a lot. When I went back to work after my two weeks of paternity leave, I bumped into them one afternoon on labour ward. I didn’t know how to tell them my news, but before I had the chance to say anything, they handed me a huge box of nappies. “We wanted you to have these for your new baby and please make sure you use them.” I was completely speechless from this incredible gesture. Every time I used one of those nappies, it brought a tear to my eye.
As Baby Loss Awareness week begins, my wife and I have just had our second child. I feel incredibly blessed, and even more determined that we must do everything we can to raise awareness and support other families whose babies have been lost too soon.
It made me think about Sam and Rok, who I first met in summer 2018 when they were expecting their third son. At the time, they told me their first two sons had been stillborn. This week, I became conscious that after all this time I had never asked their sons’ names. Not because I didn’t care, but because I never knew if they would like me to ask.
I’m so glad now that I have asked because they have offered to share their precious memories of their sons, Uroš and John.
Uroš and John
Rok and I had gone through two unsuccessful rounds of IVF, when we fell pregnant with the third attempt, and were stunned to discover the embryo that had implanted had also split to become twins. The type of twins they became was quite rare, monozygotic but sharing a sac.
Due to my age, and because we were expecting twins, I had all of my antenatal appointments at the hospital, and regularly saw the senior sonographer who was the first person to mention the risk of twin to twin transfusion syndrome (TTTS). At week 16 we were told that the twins were at high risk of developing TTTS, so I read as much as I could.
On Friday 14th April 2017, Good Friday, we went into town shopping for baby gear. I was exhausted, and generally didn’t feel myself. I’d started to struggle with sleep at night, a bad back waking me up. During the night on Friday I moved to the sofa in an effort to get some sleep, the pain was quite bad. I simply thought I’d over done things and decided to have a relaxed day on the Saturday. After another sleepless night we decided to go to the hospital on the Sunday as I knew I couldn’t continue the way I was. After a long wait, we saw a midwife and consultant who diagnosed me with a urine infection and prescribed antibiotics.
By 4am on Friday 21st April, a week later, I hadn’t slept for most of the week, my stomach was rock solid and I was getting progressively worse. I woke Rok and said we needed to go to the hospital. Again, I was seen by a number of midwives and consultants. We even joked with one of the consultants about naming the twins Paper and Scissors to follow Rok’s name. Due to one of the midwives listening to our concerns about my stomach being solid and having no movement, the consultant arranged for me to see my sonographer. After a week of misdiagnosis, the sonographer looked at the scan for what felt like less than thirty seconds and said I had to be operated on immediately, we had TTTS. Our worst nightmare had come true.
We required surgery to try and correct the TTTS. Once the surgery was over, they scanned the twins again, they confirmed instantly that the smaller of the two didn’t have a heartbeat, but the other twin looked to be doing ok. After a period of monitoring we were moved to a waiting area. The entire team were very flippant about the smaller twin being lost, for them the focus was on the fact that the other twin had survived.
I was taken to my bed and Rok went home to get me some clothes and toiletries as we hadn’t left in the morning with anything. After coming back at around 1.30am, with my things, the nursing staff explained that Rok should come back at 9am for the doctor’s morning ward round, at no point did they explain he could stay with me.
During the night I was sick and started to feel cramping. The doctor on call instructed the midwife to give me steroids which I believe is usually done to try and prepare any premature baby for an early birth. A patch was applied to my stomach to try to ease the cramping, which were assumed to be early labour pains, one of the potential side effects of the laser surgery that I’d under gone. An hour or so later the cramps had gotten worse and the doctor decided I was in the wrong place and needed to be moved to the delivery suite.
The next thing I remember is being in the delivery suite with multiple midwives, the ward sister, and a couple of doctors. They were scanning my stomach and everyone was in compete silence. I think I knew then what had happened. The ward sister was very concerned that I was alone. The doctor left the room and returned with a colleague who also started looking at the scan. I broke the silence by saying “I think you’re about to tell me there’s no second heartbeat”. Everyone in the room was just so quiet. At the time I felt nothing other than complete exhaustion. I tried calling Rok a few times but where we live has no reception, and I knew he simply wouldn’t hear the landline. I wasn’t upset. The midwife assigned to look after me came over to say she was sorry and that she’d be at the desk in the room all night if I needed her. It seems silly now but I just went to sleep.
When I woke in the morning, I tried calling Rok again, he was in the taxi on the way to the hospital, I hadn’t left him a voice message the night before but he had the missed calls. I had to tell him that our second baby had also given up his fight.
When Rok arrived, the doctor came to see us and explained that the twins needed to be delivered. It was the same consultant we’d joked with the previous day about naming the boys Paper and Scissors. It all seemed so unreal. The doctor was discussing the delivery with us, I was in shock and remember looking at the doctor puzzled saying something like… “It has to be a Caesarean”, because that’s what had been discussed all along, there was no chance of it being a natural birth. The two doctors looked at me, one was perched on the bed, he explained that there was no longer a risk to the twins so now the focus had to be on me. I remember feeling really stupid. He explained that they strongly advised against a Caesarean as I’d be left with a large scar that would be a constant reminder.
We were left with the day ahead now involving a natural birth of our two dead sons. I simply couldn’t allow myself to think about it. Rok called our close friends and family to tell them what had happened, he is truly Rok by name and rock by nature. I couldn’t even speak to my own mother; I knew as soon as I opened up to someone other than Rok I’d fall apart and wouldn’t get through what was ahead of us.
After a relatively short labour both our sons were delivered and taken away. The bereavement midwife came in to see us. I remember the doctor asking if I wanted to see the boys when she delivered them, I said no because the way I felt was they weren’t my sons. This is something I really regretted afterwards when we were home, but at the time it was simply a case of surviving.
The bereavement midwife introduced herself as Megan, and explained her job. She was the nicest person you could ever imagine. She brought a lemon coloured box with her. I couldn’t bring myself to look at what was in the box, but she explained that she had taken a photo of our sons, and that they were beautiful, that she’d also taken hand and foot prints too, there was a teddy for each them, and a certificate noting their birth. I hated the box at the time, but now it’s one of the most precious things we have.
I remember talking with Rok about what names we should give the boys. We hadn’t given it a great deal of thought at that time because it felt we still had a while to go. We started the week with the boys reaching 24 weeks, the point where they’re considered viable. A week later both boys were stillborn, 25 weeks to the day. The hospital asked us for names because they give a token birth certificate. We agreed on Uroš and John after members of our families that had passed away, we thought our boys should have names of people who would look after them.
The staff were very understanding and let us take our time before going home the following day. When we initially lost the boys, all I wanted to do was get out of the hospital, it felt like once we were home it would all go away. When we did get home it felt empty, and I just wanted to get back to the hospital as it was the only connection we had with the boys.
At this time the overall feeling of loss was completely overwhelming and I was pretty much house ridden. I’d left our flat a couple of times due to necessity, but every trip out involved floods of emotion and endless tears. I was completely drained and we spent every night lying in bed doing crosswords simply to clear our minds and get us to the point of exhaustion where sleep took over. When I fell asleep Rok would spend a further few hours on the internet researching everything and anything to do with Stillbirth.
Meg and her colleague Tracy got us through the first few weeks. I have no idea who chooses to do that job, but I’m certainly thankful Meg and Tracy did. They are both incredible individuals.
The hospital had given us a list of funeral directors, I wanted to get on with it, I felt the funeral was hanging over us and wanted to get everything wrapped up. After dealing with registering the boys’ deaths, we started contacting the funeral directors. Rok did all the calling as I wasn’t able to talk without breaking down at that point. Finally, we contacted the Co-op and they were great. Not only were they the only company who would take on the burial of a baby, they also offer their services free of charge due to the difficult situation families are going through.
Meg had dressed the boys in knitted gowns and hats provided by charity knitters. Although they had been made and given with love, they simply didn’t look the way we wanted, so we decided to dress them in clothes we’d selected. We ventured to the Baby Section in John Lewis, the team there were very helpful. Rok was struggling to talk and I was in floods of tears. The department manager offered us coffee and a break to gather ourselves. When we’d selected everything – four baby grows, four blankets, four hats, four identical books and four identical teddies they opened up a till point just for us so we could have some privacy.
Thanks to Rok’s research, we decided to buy two of everything, one set for them to wear straight away, the second would be fresh for them at the time of the funeral. Doing this meant we could keep the set of clothes they’d worn and have something else to remember them by. We’d also read about something parents do when their babies are premature, which is to sleep with the clothes beforehand so your scent is on them before the babies get them to wear. Although Uroš and John wouldn’t know this it helped both Rok and I. Our yellow box has now expanded to a suitcase my grandfather had when he left the army, it has all of the boys’ clothes we put on them in hospital with Tracy, and duplicates of the teddies and bedtime story books we put with them in the coffin.
It took a very long time to get back to some sort of normality, but Rok and I have always tried to remain positive as much as possible. As horrific the experience was, we’re very fortunate we know why we lost the boys, many people don’t know what’s caused a stillbirth.
Rok and I desperately wanted a child, and due to my age, we didn’t have the luxury of waiting until we tried again with IVF. After losing the boys on 22nd April 2017, our consultant recommended we start IVF as soon as I was mentality able. We had a further failed attempt before a second successful one, where we were told a few days prior to Christmas that we were pregnant again. Thankfully this time it was one embryo that didn’t split. We made the decision to stay with the same hospital the twins had been born in, simply because the team knew our history and all wanted to give us the best care possible.
The further we got from the 25th week mark the easier things were. I didn’t have a particularly great experience with the birth of our (third) son Jamie, but I have a big smiley face Caesarean scar to remind me of how great he is, and how lucky we are to have him every day.
This week I’ll be wearing my pink and blue ribbon pin with pride. The first year when we lost the twins, we attended a memorial service at the hospital during Baby Loss Awareness week. I struggled to say the boys’ names, and I felt there was little hope, that we’d carry this heavy baggage with us forever. Now I’m sad, but I can see a future, and I’m happy to talk about the boys, especially if it helps someone else realise that they can get through it.
Baby loss is still a very taboo subject, people simply don’t know how to react, don’t know how to talk about it or if they should. I hope by wearing my ribbon I can change that for one or two people.
Breaking the Taboo
Having written this blog with Sam and Rok, I really regret that I hadn’t asked them more about Uroš and John sooner. It’s made me realise we have such a long way to go in society and as healthcare professionals, when it comes to raising awareness and in Sam’s words, ‘breaking the taboo’ of baby loss. That’s why this week is so important. There are so many things for us to think about and these are just a few thoughts I had:
What can doctors, midwives and support workers do?
It always strikes me that most good and bad comments that patients make about staff involve communication, rather than medical practice. Not everyone has received formal training in how to support parents who have lost their babies, I know personally I haven’t. Charities such as SANDS and Tommy’s have identified this issue and are doing fantastic work to bridge the gap with voluntary workshops, but should the NHS be obliged to provide training for all staff?
Dads have lost too
Most of the stories I have read this Baby Loss Awareness week have been from mums. It made me think about how dads are coping with their own emotional experiences. As Sam said, at the point when they had lost the first of their sons, “at no point did they explain he could stay with me.” Are dads getting the support they need too?
Support for staff
It’s also important to acknowledge the impact of baby loss on the midwives, doctors and maternity support workers who are there to care for them. All too often there’s little emotional support available, or time given to process or debrief. One moment you are breaking the devastating news that a baby has been lost and then you are whisked off to the next patient. If you’ve read obstetrician, turned comedian Adam Kay’s book ‘This is Going to Hurt’ he talks about how the loss of an unborn baby triggered his decision to leave medicine. This emotional weight is not talked about enough. Is it time we do more to recognise this and better support staff?
And to all of the babies that have been lost too soon
Uroš and John and all the other babies; We are thinking of you. We remember you.
Thank you so much to Sam and Rok for sharing their memory.