Sadia’s story

I lost my baby in 2010 after she was diagnosed with a genetic condition called autosomal recessive polycystic kidney disease (ARPKD).

She had the lethal version of this condition and it was picked up very early at the 20-week scan. We had to decide whether to terminate or continue with the pregnancy; the decision was difficult to make and I felt I was being pressured at the hospital as they kept saying it was a lethal form and the baby had no chance of survival. I wanted to explore further opinions and arranged a private scan.

Unfortunately, the prognosis was still the same. I carried out further research and connected with an online community of parents whose babies had the same condition. Many parents whose babies were diagnosed early unfortunately lost their baby either in the womb or shortly after birth. There were a handful of parents, mainly internationally, who had attempted interventions such as amnioinfusion and whose babies did survive. These interventions were not available in the UK. I came into contact with one parent from the UK whose baby did survive but passed away aged 5 due to complications of the disease. 

We knew that life would be difficult and probably short if the baby survived. It had taken me 6 years to get pregnant after struggling with fertility and previous miscarriages. We couldn’t even comprehend the idea of terminating this much wanted pregnancy, but accepted that life may be short. We were prepared to fight for this baby and deal with any difficulties thrown at us. I decided to continue with the pregnancy. Whilst my baby was inside my womb she had no idea of what she would face. As long as she was in the womb she was ‘alive’ and existing. I knew that once born her lungs would struggle which would lead to death. I wanted to keep her inside me for as long as possible, in the comfort of my womb, where she was safe and where she existed. 

My labour began at 31 weeks. I had no fluid so there were no waters breaking. I started to experience cramps and was confirmed to be in early labour at the hospital. However, the cramps were erratic and I would experience hours of no pain which led me to being sent home. I was told that labour was unpredictable when there is no fluid.

At home my cramps were on and off. In the morning I felt like I had passed something that I thought was a mucus plug but it was grey and I realised it was the umbilical cord. I called hospital who told me to come in straight away. I didn’t realise the emergency of the situation until I got to hospital and was questioned why I didn’t come by ambulance. A room was being prepared and once on the bed and confirmed that it was the cord that had prolapsed, the emergency button was pressed and everyone came rushing in to help. Before I knew it, I had a canula placed in my hand and my bladder was being pumped with saline to lift the baby’s head off the cord. I was being prepped for surgery.

Everything changed when my consultant walked in and told everybody to stop as she knew me and knew that my baby was incompatible with life. I was told the baby had no heartbeat; she had died before being born. I could see the sadness and confusion in people’s faces, and I felt it was unfair for them to just give up on my baby. Everybody left and I was left to grieve alone and make sense of what had just happened; had she really died? How can you die without being born first?

A while later I was told I would need to think about birth and they would need to hook me up to a drip to help my uterus contract because it wasn’t doing anything; it was probably in shock like I was. It felt so surreal being pregnant still and having a bump but carrying around a dead baby. I was adamant I wanted an epidural as I just didn’t see it worth the pain to give birth to a dead baby. I didn’t want to experience pain and then not have something to take home at the end. I was denied a c section.

I felt unprepared as I didn’t expect my baby to die before birth. I had plans to make memories, make videos of the short precious time we would have together, but that was all now taken away from me.

After a long labour, she was finally born. The midwife said she was beautiful. I was not prepared to see such a swollen face as a result of the cord being wrapped around her neck. I was scared of the baby that was handed to me. A while later the swelling reduced and her features resembled a baby. I later found out that her cord was very long and this can happen with anomalies and therefore more chance of the baby dying during labour. I wish I was more prepared for things, I don’t remember what her body looked like so wished I had bathed her at hospital and made videos. I did bring a camcorder but didn’t have energy to record anything and took only a few photos. I wished someone had stepped in and made those memories for me. The person who comes in to take hand and foot casts was not available too, so I had just hand and foot prints instead.

Everybody left and I was left to grieve alone and make sense of what had just happened; had she really died? How can you die without being born first?

I was trying to be practical and sensible and not bond with the baby by not holding her too much. I became jealous of my husband who was always holding her. I had a fear of crying and not being able to stop. I remember planning how I would say goodbye and how I wanted to do it in my own time. I requested she be taken away whilst I was having a shower as I couldn’t bear to say goodbye knowing that was the last time I would see her. Unfortunately for me, that message got lost and I returned from my shower to see her still there!!

When I did say goodbye, it was the hardest thing in my life. I didn’t expect to cry so hard. I was so glad my auntie had come to visit and was able to support me as my husband went with my daughter to make funeral and burial plans. Leaving was hard and having to walk the corridor of the maternity unit without my baby and with just a white memory box was gut wrenching. I didn’t want to say goodbye to the lovely midwife who had supported me but I was glad she hugged me from behind as I left.

At home it felt like I was in no man’s land, not knowing what day it was and feeling like I didn’t belong anywhere. I longed for normality but missed my daughter; everybody was moving on but she was still on my mind. I accessed online support spaces as they felt welcoming and I could be anonymous. Reading other people’s stories gave me comfort, knowing that I too could move on in a positive way which doesn’t mean forgetting about her. I had a 6-year-old son and I thought about how to include him and break the news to him. We were always honest with him and he went with us to the cemetery and I believe this helped his understanding. There were hospital appointments to attend regarding genetic screening. The first visit back to hospital was tough as it bought back many memories. 

I got pregnant soon after and thankfully had a healthy baby boy. The journey was stressful and I don’t think you ever relax.

Deciding to continue with a pregnancy is a personal choice, as is deciding to terminate. You always deal with people that can be judgmental but they have not walked in your shoes. Talking to others helps because you can weigh up everything. If not, try writing down your thoughts. At the time my mind was full of information and I just wanted to sleep because it felt like my brain was overloaded. Yet when trying to rest my brain couldn’t switch off. This is why I felt writing things down helped. I believe that sharing my experience not only keeps my daughter’s memory alive but helps other parents who are going through a similar experience.