PLEASE NOTE: THIS STORY DEALS WITH INFANT LOSS

In our family there is myself (Jasmine) My husband James. We have 3 children – Pippa, 8, William who would been 6 and our youngest child Ezra who is 10 months old.

William was born full term at 40 weeks and 4 days, unexpectedly unwell. Upon birth he required urgent care and breathing support and further investigation to why he was unable to breath on his own. After 7 weeks in NICU he was diagnosed with a rare genetic disorder called X-Linked Myotubular Myopathy (XLMTM) and passed away at 9 weeks (65 days old).

Our second baby William was born in 2017. After a ‘text book’ pregnancy I had him slightly over due at 40 weeks and 4 days, weighing 7lbs 2oz. At birth William was born unexpectedly unwell, it caught everyone off guard as no body was prepared for a emergency situation upon delivery. At birth he came out non responsive, he didn’t move, cry and wasn’t breathing by himself.

The doctors and nurses worked very hard and he ended up being incubated at birth then transferred hours later to a hospital that had a Neonatal Intensive Care Unit. We spent 9 weeks in hospital with William, during that time we awaited for answers which ultimately brought a devastating diagnosis that meant that William wasn’t going to survive. He passed away at 65 days old.

The hardest part about being in hospital for so long was waiting for answers. At the start I held a lot of hope and I was extremely positive. However as time went on, the waiting, sitting in hospital, leaving him every night and then doing it all again the next day became extremely painful and draining. I felt a really big disconnect from the ‘outside’ world during that time. Our life revolved completely around him being in hospital, however life was still happening elsewhere but I didn’t feel apart of that world during that time.

The hospital stay was a struggle. Being so unexpected and our daughter Pippa was almost two years old at the time. We had a lot of family who helped us juggle everything and we also found instead of both James and I going in together, if we tag teamed. It meant that both William and Pippa had their mum or dad with them. I also really appreciated people who made us meals during that time, hired us cleaners and did little things that really made big differences.

When we received William’s diagnosis, we were devastated and we were faced with unthinkable decisions. Shortly after we moved him to palliative care and made sure he was surrounded with all our love until he passed away.

We took some time to just ‘be’ after his passing. We both weren’t in the headspace for decisions. We knew a few things like we didn’t want a funeral and we wanted to cremate him. Eventually we came to the decision on a celebration of life which we did by the Redcliffe waterfront where we live. James and I planned everything and organised it for a weekend about two and half months after he passed. When we felt ready for it. A lot of people came, including all of his nurses, doctors and specialists. We felt extremely loved and cared for by the turn out and it was a really nice way to remember him.

A lot of people extended their gratitude to us for organising the celebration and that they could come along and support our family.

Unfortunately I didn’t experience any after support and in hindsight this was a huge oversight. Eventually I did see a physiologist who specialises in infant loss and she was a huge help in my bereavement journey. When it comes to celebrating your baby’s life in whatever way that looks to you, take the time to decide on it as this decision is so personal. Only you can come to this decision and there is no right or wrong way.

We have a garden at home that is ‘William’s garden’. Each year on his birthday we go to the plant nursery and buy new plants to refresh it and Pippa picks something new, like an ornament to add to it. We always make a cake and sing happy birthday.

Soon after we lost William I came across ‘Walk for Prems and sick bubs’ online. I immediately joined and made a team named ‘Team William’ and told our family and friends. It was about 3 weeks before the walk and we had so many family and friends join and donate straight away. Everyone wanted to know how they could support us and this was a way they could show that to James, myself and Pippa. LLTF walk for prems event created a connection for people who wanted to show their care to our family. Now we do the walk each year as ‘Team William’ and we do this in honour of him and to keep his memory alive.

I really would have appreciated knowing more about LLTF and having more connection to other parents during our time in hospital. There was a huge sense of loneliness during our hospital stay, particularly when we found out William was going to pass away. Particularly being no support after we left hospital and having to go and seek the support myself when I was in a very fragile state was just too hard to do.

When your in a hospital with your premature or sick baby the ‘mental load’ the parent is carrying is at capacity. So, having these services readily available means that parents don’t have to go and seek to find the support and help, its there available to them. Being connected in with support groups helps to create a sense of belonging and support during a time that is hard and unthinkable.

The grieving process is so personal and individual. Taking the time in your own journey as its different for everyone. I found seeking help with people who specialised in bereavement for support. Also connecting with people who had been through similar via social media, talking to them and reaching out for a chat. I’ve connected with a lot of other mums this way and its been really nice talking to someone who has experienced similar.

6 years on, life is a lot different. We talk about William every day and include him openly in our conversations and life. We recently welcomed our third baby to our family, Ezra, at the start of 2023. It’s been a very healing experience having him here and seeing Pippa become a big sister all over again. We have really enjoyed continuing our traditions with Ezra here like the 2023 Team William, walk for prems and sick bubs.