Neonatal loss: Jamie shares how after having her second son Elias in October 2024 she felt something wasn’t right. Initially she was told that within 48 hours baby Elias would be more alert and wanting to feed more regularly but when a community midwife sent them back to hospital everything changed. Elias was diagnosed with a serious heart condition which had gone undetected in Jamie’s pregnancy and was critically unwell. He fought very hard, but he passed away when he was three weeks old. 

Following Elia’s loss, Jamie found information on the Sands website extremely helpful and used the Sands forum on Facebook to speak to other mums in a similar position which helped her know that what she was feeling was to be expected. Following genetic testing she and her partner decided to try for another baby, a sibling for their first son Noah and for Elias. Around seven months after Elias was born, Jamie fell pregnant again. In March 2026, baby Issac was born safely. 

Please be aware that Jamie has chosen to share pictures of baby Elias and baby Issac with her story. 

My son Elias was born on the 25th October 2024 by planned caesarean. He was our second son and we felt so complete. Everything seemed perfect and we couldn’t wait for him to meet his big brother. 

Whilst at the hospital, we started to raise a few concerns about him being extremely sleepy and not feeding very well. We also questioned his skin colour, but we were told everything looked normal and within 48 hours he would be more alert and would be wanting to feed more regularly. 

We took Elias home and he met his big brother Noah. It was the most magical time. However, when the 48 hours were nearly up, I still felt something wasn’t right. I spoke with a community midwife who came round pretty instantly. Whilst she wasn’t too concerned, she did believe he was slightly jaundice and told us to head to the hospital. This is where everything changed. 

Quite quickly it became an emergency, and we were told Elias was critically unwell. 

Soon after, we discovered he had a serious heart condition which went undetected in my pregnancy. We were devastated. Elias fought very hard but unfortunately passed away when he was three weeks old. 

Leaving the hospital without him was the hardest thing I have ever done. No one will ever understand the pain unless they’ve been through it themselves. Nothing can prepare you for telling your other child that their sibling has died. You have a nursery filled with clothes and items that can’t be used. You have to plan your baby’s funeral. Seeing other babies and pregnant women hurts so much and people don’t know what to say to you so therefore say nothing at all. 

I used the Sands website to look up a lot of information which was extremely helpful and I also used the Sands forum on Facebook daily where I connected with other mum’s going through similar circumstances. 

It really helped to speak to other mums and to know that what I was feeling was to be expected. I made a really good friend through the site. We talk almost every day, and we have since met up a couple of times and both gone on to have another child. She has been a great support to me, and I know that we will be friends for life. 

We had genetic testing and the tests came back clear. Once we received these results, we decided we would like to try for another baby, a sibling for Noah and Elias. 

Around seven months after Elias was born, I fell pregnant again. I felt a huge amount of relief but also complete shock and fear. The pregnancy was extremely difficult and when I began to show, the only way I could handle it was to hide. I couldn’t let myself believe that this baby might survive. The pregnancy was filled with lots of additional scans and support which really helped, but the anxiety and fear never left. 

On March 18th 2026, baby Isaac was born. I couldn’t believe that he was finally here. We were given lots of additional checks and a lot of emotional support. His heart was checked and finally after a few weeks, I felt like I could breathe again. 

Having Isaac has filled our lives with hope, joy and love again. He has brought so much happiness to us and I’m so grateful that he is here. He will never replace Elias, and we will always talk to him about his big brother. 

Being pregnant with Isaac was one of the scariest things I have ever done, but I am so glad that we decided to open our hearts for another baby to love. 

I had wonderful support from my bereavement midwife and have benefitted from a lot of counselling sessions to get me to the place where I am today.

Baby Elias

Elias in hospital

Baby Issac with his brother's knitted heart

Jamie and Issac