"Let down by lack of bereavement support"

Our whole lives changed forever the day we attended the scan department  for our 20 week scan.

Straight away I could tell something was wrong. The sonographer then told us they were so sorry, but they weren't seeing a heartbeat today. Suddenly our lives changed forever. The sonographer was incredibly empathetic, held my hand and guided me up when I was ready. I am eternally grateful to them, they knew what I needed before I did and they knew what to do for us in that moment.

Another lady came in to confirm that there was no heartbeat. We weren't told what caused this. We were told we needed to attend triage. I didn't want to pass by expectant families because I didn't want to scare them. The ladies tried their best to help, however an expectant mother with her partner were walking by just at the moment we were leaving the room, so they were in front of us the whole walk over to triage.

I am aware other mothers in this position wouldn't want to immediately see a pregnant lady and their partner walking by in their little happy bubble. It's a lot to see just immediately after being told your baby has no heartbeat. I don't fault the staff, they tried their best and we appreciate that. However it may be something to consider going forward. 

When we got to triage no one came in for 2 and a half hours after the news being broken to us. We were left with no updates, no explanations, nothing. I understand perhaps they wanted to give us some time to process, but it would have been nice if someone had popped in, asked if we needed any water or anything, and explained what was going on and what to expect.

Eventually a midwife came in and they were incredibly lovely. When the doctor came in, I found them very cold and I couldn't understand anything they were saying as they were mumbling. I tried to explain my symptoms and ask some questions, however I found the doctor extremely unhelpful. I ended up just agreeing and the doctor left. When the midwife came back in, I told them I didn't know what the doctor said. The midwife told us what they understood of our circumstances, they tried their best to answer questions, sat with us and held my hand, listened and tried to do what they could. The midwife gave me an appointment to come back in two days later, some leaflets and the number for triage and labour ward.

When we arrived at labour ward we were greeted by a midwife who came and escorted us to a side delivery room. Our delivery midwife was with us throughout the whole process. Our delivery midwife is what I call one of our angels sent from our daughter. They were incredibly kind, compassionate, patient, and they tried their best to give us the best experience with our delivery. They made all the difference.

Our other midwife gave us a brief overview of what conditions led to our daughter's death. They were so kind and compassionate,  told me things I needed to hear in that moment. They both cried when I delivered my daughter, and it made me feel so blessed that my daughter had midwives who cared so much, and it also gave me permission to cry too.

At handover, we were introduced to  midwife who was our other angel. The midwife introduced themself, moved us down to the Ohana suite, and let us know they were on the other end of the phone if we needed anything at all overnight. They told us what to expect, talked to my daughter like she were still here, she got a beautiful Moses basket for her and they took the time to provide care and attention to make her look so beautiful and took precious photos. They sat with us, helped us make difficult decisions and made us feel like we could get through it, even if it was just getting through the next hour, they made me feel like we could do that.

In the morning, we were introduced to another brilliant member of staff. They talked us through the paperwork, arrangements and what to expect upon leaving the Ohana Suite. They were so kind to us. The Ohana Suite is an invaluable piece of bereavement care, it made all the difference for us. It was like pressing pause in a moment in time where we could be a mum and dad to our daughter and friends and family could meet her. It was everything for us and I know other bereaved families feel that way too.

I feel there has been a lack of support from the bereavement midwife. The only time we have had contact is when we were leaving the hospital. We called and left voicemails but there has been no response. Perhaps weekly calls to check in on bereaved parents may be beneficial? It’s been over 2 months and we haven’t been called once.

Leaflets could be given out more appropriately, such as at triage as too many leaflets at the one time is overwhelming. We were given loads of leaflets on labour ward and it was too much. The sands book for example could be given at triage as it has information which would help before readmission. The mother’s GP is contacted following discharge but perhaps contacting the partner's GP too would be helpful. Also if there is another route to leave too as we were taken through the main exit where people could tell what had happened, we heard all of their well-meaning language but it made the experience worse.

We don't feel there was support after leaving hospital. We didn’t know where to access readily available support or if there was support available from hospital. We left not knowing why our daughter died, we were told they detected Hydrops but that was all we know.