A personal experience of infant loss

“He only lived for four short days and now our lives will never be the same.” – A journey that in a perfect world, no other families should have to go through. No journey is the same, but it is filled with the same pain, the same despair and powerlessness. So how do you keep going in this situation? How do you wake every day and face each day when the worst has happened?  Our midwife, Rachel Kunde, shares her personal experience and words of comfort.

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I remember the moment my life changed forever. It was in a small ultrasound room just over three years ago at the Maternal Fetal Medicine unit at the Mater Mothers’ Hospital. I was 35 weeks’ pregnant and had a few complications in my pregnancy and was having a routine scan when the doctor said a bunch of words to me that seemed unreal – ‘nothing you have done or could have done has caused this’, ‘there are a few concerns about your baby’, ‘we should be reserved in the outcome’. You can imagine that sinking feeling in the pit of my stomach. The confusion over the words the doctor was speaking. My baby was alive inside of me. His flickering heartbeat told me that. But the moment he left my body he would likely die because of what we would find out six months later was a fluke of genetics. A simple coding error that meant our perfectly formed little boy didn’t have the muscles to move his body or expand his lungs. I didn’t know it then, but from that moment a new version of myself was born. A version that as time goes by, I have had to reconcile my old self into.

Rachel with Hugo, by Emma Jean Photography

It’s been a journey that in a perfect world, no other families would have to go through. Sadly, as a midwife I see too often other families thrown unexpectedly on the same journey; through miscarriage, stillbirth, neonatal death or significant birth defects that impact a child’s quality of life. No journey is the same, but it is filled with the same pain, the same despair and powerlessness. So how do you keep going in this situation? How do you wake every day and face each day when the worst has happened?

Remember that your child matters in so many ways.

His name is Hugo and I love talking about him, because this reminds me he existed and helps him live on. When I say his name, I get a clear image of his face in my head. He was a life that had meaning, and his life should be celebrated. Hugo has taught me so much about what it is like to be human and to have loved and lost. Loving and losing him changed me to my core and made me into who I am today; someone more grounded, a little less carefree and someone more appreciative of all I have in life.

In the beginning it made me upset that so many people were going about their lives completely carefree and not having to learn these lessons the hard way, but over time that feeling has changed. Now I thank Hugo for coming into our lives, even though it was so brief. He has a legacy that lives on through conversation and advice I can give to other couples going through similar situations in life.

People will not know what to say to you.

At some point someone will unknowingly say something insensitive simply because they have no idea what else to say to you. I noticed the different looks I got from people, the way people who I thought were friends tended to avoid me if we were in public because they thought I might break down if Hugo was mentioned.  The comments like – ‘he was obviously not meant to be’ or ‘at least you have another child’ made me so angry, but I came to realise over time they were empty condolences made simply because people didn’t know what else to say. Conversations became loaded because you would tell people you had just had a baby and they would become excited with congratulations, and then you had to decide if you went along with it or told them the truth – he only lived for four short days and now our lives will never be the same.

Hugo, by Emma Jean Photography

Everyone grieves differently.

There really is no right or wrong way to express grief. My husband seemed to process the loss a lot quicker and was looking to the future sooner than I was. This did not mean he felt the loss any less, it was simply just a different process for him and that’s ok. He was extremely patient with me and we emerged as a stronger unit from the whole process. We each recognised the other’s different approaches to grief and supported each other on our different paths. A situation like this can either make or break you as a couple and it’s beyond important to be there for each other and to allow time. Your grief will change over time, it never goes away, but it becomes more manageable and a little less sharp. When I talk about my grief now, I would say losing someone you love is like never being able to see the colour blue again. You can go on with your life and even be happy again, but the world looks permanently different and you can never forget what it used to look like.

If you decide to have another child it will be another life lesson filled with patience, anxiety and stress at various stages throughout your pregnancy, but you will survive that too. We got pregnant nearly a year after losing Hugo and we never went into pregnancy to replace what we lost, having Hugo’s little sister healed us in ways we could have never imagined. However, if you feel your grief is starting to rule all aspects of your life, seek professional help early.

Finally, you are not alone.

It wasn’t until I started sharing Hugo’s story that I realised just how many other people around me had been through a similar situation. There is countless support through social media and the internet for perinatal loss and reaching out for help or to simply share your story can be tremendously healing.

Website Links:

Pregnancy Loss Australia – miscarriage, stillbirth & infant loss support

SANDS – miscarriage, stillbirth & newborn death support

COPE – planning a family after pregnancy loss

Precious Wings