I felt I was expected to grieve in silence

Shelley's baby Joseph was stillborn at 37 weeks. A post-mortem found that Joseph was suffering from intrauterine growth restriction

By Shelley, whose baby Joseph was stillborn at 37 weeks

I am over six years in to my journey and I still think about Joseph every day. He is a part of our family and his little sister often talks about him.

My husband and I were lucky to fall pregnant very quickly and both the 12 and 20 week scans went perfectly. At the 20 week scan we discovered we were having a healthy baby boy and we excitedly started to plan our future. Once we knew the sex of our baby, we went straight to the shops to buy his first outfit.

The rest of the pregnancy went smoothly as far I was concerned. Although I did feel I was small and I raised this and the lack of fetal movement to my midwife a few times.

Looking back I still kick myself for not being more insistent with my concerns but they were brushed aside because I had an anterior placenta. I let the concern wash away with thoughts I was just being over anxious and this was my first baby so I’m bound to be smaller.

At around 35 weeks I went to a group physio appointment. We went around the room and everyone gave their due dates. Mine was 29th October 2010. The other ladies were due months afterwards yet their bumps were much bigger. At my next appointment with my midwife I raised my concerns once more. I was told I was measuring only a few weeks behind and we all carry differently. I remember feeling uneasy but reassured myself that the midwife was not concerned so I shouldn’t be.

On October 11 2010 I began to get contractions which continued all day. I was 37+3 so I wasn’t overly concerned. I rang the community midwife who advised to monitor contractions and when they were nearer five minutes apart to call the hospital.

I spent the day timing every one. They seemed to go from every 18 minutes to every 6 minutes then back up to every 20 minutes. As this pattern continued through the night I rang the midwife again and explained that they were all over the place. Again I was told to stay at home and that I was likely in latent labour, or having Braxton hicks.

I continued to wait patiently and another night passed. I was starting to feel uneasy, but I pushed this to the back of my mind.

On Wednesday 13 October at 37+5 I called the midwife again and I was told if I was concerned to go down to the local hospital to get checked out. I remember feeling a bit silly and ringing my husband to come home from work.

We waited while a midwife put a heart rate monitor on but after a few minutes she said that the machine was playing up and she would find another one.

We were taken to be scanned

We sat on the bed laughing and joking, pushing the worry away. The midwife seemed to be away for ages. When she returned we were taken to a scan room to be scanned. As we walked in the room I knew something wasn’t right as there were three people in the room already. I nervously lay on the bed and after a few minutes the doctor turned to me and said, ‘I’m sorry but there’s no heartbeat.’

Those words still make me feel sick to my stomach. I just remember screaming and screaming. I looked to David who sat with his head in his hands. I eventually managed to stop screaming and sat and cried uncontrollably. How could this have happened?

Things happened very quickly after this. We were taken to another room to ring our family, one of the hardest conversations I’ve ever had.

Giving birth to my stillborn baby

It was after I put the phone down the penny dropped as I looked at the sonographer and I said, ‘You’re going to make me give birth to him aren’t you?’ I sat and pleaded with her but she explained that it was the safest way for me and for future babies. I felt sick. How could I give birth to my baby when he had already gone?

The next few hours passed in a blur we had to go home and get our hospital bag. The door to the nursery was ajar. I felt sick and devastated as I saw the sunlight on the freshly painted walls. My contractions were still continuing throughout these hours but I could barely notice the pain.

It was explained when we arrived at the hospital that the doctor would scan me one last time. I still hoped that they’d made a mistake and would tell me he was OK. As I was scanned and no heart beat was confirmed, my heart shattered again all over.

I was given medication to induce my labour although I was already in early labour at the time. The medication quickly sped things along and 6 hours later, at 11.37pm, our little boy arrived.

I immediately felt elated. I’d done it! For a split second I forgot he had gone. There was no cry and reality set in.

Something I will always regret

The midwives asked if I would like to see him but I was too frightened , something I will always regret. They asked if I’d like pictures, which I refused at first.

If it wasn’t for the support of a very lovely midwife I could, in my mind, have made the biggest mis-take of my life. Thankfully I changed my mind later that night.

During my labour I lost five units of blood and required a blood transfusion, which led to me collapsing several times. I remember just being in a daze. My happy ending had turned in to a painful nightmare. I felt I’d let my son down, and my husband and family and friends. It didn’t feel real.

Later that day we decided it was time to see our little boy who we named Joseph. He was just perfect and I couldn’t understand why I’d felt so scared to see him. He was small but long and weighed 5lb 10oz.

We had no idea at this stage that he had been growth restricted. We were asked if we wanted a post mortem and we both agreed that we needed to know why our little boy died.

I recall on our second day in hospital saying to David we must try again. I’m a mother on maternity leave with no baby. The loneliest heart-breaking feeling. My husband said, ‘No, I’m not going through this again. I can’t see you go through that pain again.’

The weeks following I was in a lot of pain both physically and emotionally, I became a recluse. I couldn’t go anywhere without David and I was too scared to do the simplest of things like go to the local shop or my hairdressers. I knew everyone would ask where my baby was and I wasn’t ready to answer that yet.

When we returned home we were faced with Joseph’s nursery, his cot, his pram all untouched. His room became a place to just go and be close to him.

Coping with grief

We planned his funeral which was so surreal and painful.

After the funeral we went through every emotion of grief. Why us?? I felt angry, guilt desperation and despair. On a morning I would wake up and for a split second I forgot. Stillbirth is a very lonely place. I couldn’t be around people and people seemed uncomfortable around me.

The post-mortem

We coped by clinging on to each other as we waited the 12 weeks for Joseph’s post-mortem results. The day finally arrived and it was explained to us that Joseph had Intrauterine growth restriction (IUGR).

My placenta had not been functioning as it should and we were told he had likely died within 24 hours of me coming to hospital. I will always regret not going in sooner but that is something I will live with for the rest of my life. I asked the consultant whether it would have changed the outcome and sadly and honestly he said if they had got to him quicker and he survived delivery, then they would have been able to feed him and he would have likely survived. That was truly gut wrenching but sadly I can’t change it.

I wish I’d been stronger when airing my concerns and trusted my instinct.

Returning to work

After Christmas I decided it was time for me to return to work. I’d been off for three months but it just didn’t seem right for me to be on maternity leave with no baby. The return to work was very difficult although this was no reflection on how my colleagues dealt with it. Some just hugged me, others wanted to know what happened. This was OK as I loved talking about Joseph and it felt therapeutic.

Some colleagues became far more than that. That’s the funny thing about stillbirth some strangers become friends, some friends become strangers.
It was the simple things at work that helped. If I was having a bad day, my colleagues would take me somewhere quiet or offer to cover me so I could go home. The dynamics of the people in my life changed dramatically. My oldest friend was amazing. Even though we were a two-hour journey apart, she was there for me every step of the way. A simple text or call every single day for six months made such a difference as it’s such a lonely place. Some people struggle with your grief and find it easier to disappear, others surprise you.

Trying for another baby

We started trying for a baby as soon as we received the post-mortem results but unfortunately it took a further 13 months to conceive. This might not seem too long but when you’ve done 37 weeks of pregnancy to go home empty handed, it is a time filled with despair and anxiety.

This pregnancy was consultant-led and full of mixed emotions. It was a terrifying time spent in and out of hospital. The hospital trips were for my anxiety, rather than medical issues and I had over 20 scans in total. Our little girl was growing perfectly, not that any amount of scans or monitoring would let me believe she would come home safe and sound.

I chose to have an elective section as I was so traumatised by my labour with Joseph and after losing Joseph I’d read every single possibility of how a baby can die in the womb. For my own mental health I wanted a date and a plan for delivery, it was decided that 37 weeks was the best time for delivery. This was based on my mental health, rather than medically.

On 17 September 2012 at 9.07am Isabelle was born at 37 weeks weighing in at 6lb 10oz. I was on cloud nine. Although it was also a difficult time as all those moments should have been with Joseph first.

They checked her over and, after resolving a few feeding issues, she piled the weight on. Life was getting better. The fog lifted a little, everything with Isabelle was bitter sweet but we felt the luckiest people alive.

Fast forward to July 2015 and I miscarried our next baby at around seven weeks. Losing the baby wasn’t the hard part as I’d trained myself to switch off emotionally before 12 weeks.

I was then lucky enough to fall pregnant soon after but the first 12 weeks were not without worry. I had several scares resulting in three scans before my 12 week scan.

At the 12 week scan all was well and we opted to have the nuchal fold and bloods checked for chromosomal abnormalities, as we had done with Joseph and Isabelle. They came back high risk. My heart sunk when I was told I had a 1 in 64 chance.

I just wanted a smooth pregnancy.

David and I decided we needed to know for sure whether our baby had any chromosomal abnormalities and opted for the amniocenteses.

The amniocenteses was uncomfortable but bearable however the wait for the results was awful. We received a call at 7pm on a Friday night to say that the result was positive for Trisomy 13 Patua’s syndrome. This was our worst case scenario as babies with Patua’s are either stillborn or only live a matter of days or months. It felt like history was repeating itself all over. The fear and anxiety re-turned and mentally I could feel myself deteriorating.
The consultant explained he would like to do a full 10 day culture as there was a chance that the extra trisomy 13 cells were confined to the placenta. It meant more waiting but a little hope too.

After a difficult 10 days, they suspected I had confined placental mosaicism where extra chromosomes were in the placenta but they were hopeful the baby was healthy and only carrying normal cells. They could never be 100 % sure from the tests. He explained that because Patua’s is so extreme that scans would indicate if there was a problem with the baby however it could present in some organs without us knowing and a blood test at birth may indicate some extra chromosomes were in the fetus. Once again we were in a cycle of scan after scan. Finally at 28 weeks we were sent to the high risk pregnancy department. They advised that baby was on the 10th centile so within the healthy weight and therefore I would be monitored weekly.

I knew something was wrong

I was small again but, because I knew our baby was measuring on the small side and I was being closely watched, I was ok. At 35 weeks I just felt that growth was tailing off. My bump hadn’t gotten any bigger and I wasn’t gaining weight on the scaled I’d expected.

I could feel panic setting in and I was uneasy as delivery was scheduled for 37+2 because of a bank holiday. I pushed the consultant to deliver the baby before the bank holiday at 36+5 but she wouldn’t budge. My anxiety levels were getting worse when I went for another one of my routine growth scans. The sonographer initially thought the baby might be on the 5th centile. My instinct was telling me I needed to say something. I explained to my consultant what had happened but there was still no budge on the delivery date. As I left the room I became hysterical and over the weekend I worked myself up and rang the bereavement midwife who had supported me throughout my previous pregnancy with Isabelle. I explained the whole situation and how it just didn’t feel right. I voiced my concerns about growth restriction and my research had shown a link between confined placental mosaicism and IUGR.

The bereavement midwife returned my call after speaking with the fetal medical department and it was agreed I would be seen there the following Wednesday. I was 35+1. As soon as he begun to scan me he mentioned that my stomach was small for 35 weeks. He believed the baby had dropped off the scale and growth had tailed off. He arranged for me to come 48 hours later and the Doppler scan showed reduction in blood flow from the placenta. It was at this point growth restriction was suspected and that my placenta had again deteriorated. Delivery was swiftly scheduled for the following Wednesday at 36+1 with monitoring every other day and a scan on the Monday.

On Wednesday 27 April as planned I was taken down for my elective section. Jessica was born weighing a tiny but perfect 4lb 3oz. I could tell just looking at her she’d been growth restricted as she was very long and thin and so like her big brother.

Twelve days later, on a return visit to the hospital to check on her development, they confirmed through analysis of the placenta that it had deteriorated and she was growth restricted.

Finding the strength to voice concerns is so important

I do feel that if I hadn’t trusted my instincts I could well have been living the stillbirth nightmare again. I am so thankful that I was able to find the strength to push and that our baby arrived safely. Jessica is now ten months old and although she is still on the small side she’s developing as expected and is now a happy, healthy little girl.

It is incredibly important to me to tell my story for so many reasons. The main one being to break the silence of stillbirth. Stillbirth is a very lonely place where you are sometimes expected to grieve in silence for fear of making others uncomfortable. I also feel it is important to highlight that IUGR can go unnoticed and can happen twice.

During my pregnancy with Joseph I had never even heard of stillbirth and it never occurred to me this would happen to me. Losing Joseph has changed my life forever. My husband and I were lucky in that we grew stronger together and now have two beautiful daughters here with us.

Read more about IUGR here

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