Friday, December 8, 2023

‘What I Wanted People to Ask Me When I Lost My Son at 35 Weeks’

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TW: Stillbirth

This week is Baby Loss Awareness Week and here at Capsule we’re committed to sharing the stories and information about this topic which is SO important, yet so rarely openly discussed. 

In NZ we don’t collect data on the number of miscarriages, but it’s estimated that between 13,000 to 15,000 women experience a miscarriage in NZ every year. That means for every four pregnancies, one ends in miscarriage.

Then, there are the babies who are stillborn – who die during pregnancy or in utero after the 20th week of pregnancy. Each year about one in every 200 pregnancies ends in stillbirth.

For something that is not uncommon, it seems bizarre – and sometimes quite cruel – that it’s a topic we so rarely talk about and remains as something quite taboo. It means many women – and men – go through the experience feeling completely alone, often unaware that so many other Kiwis (perhaps even their closest friends!) know just how heart-wrenching their pain is.

Today we’re talking to a lovely Capsule reader, Leonora, who this year – just in July – was faced with the unthinkable. At a scan while 35 weeks pregnant, she and her husband learned that their cherished little baby – a son they had named Odilon (Odie for short) – had passed away.

Leonora has bravely and generously agreed to share her story, in the hopes it may help others feel less alone. Plus, she has some absolutely brilliant advice if you ever have a friend go through it about what you can say, ask or do that could mean the world to her.

We are so incredibly sorry to hear about Odie passing just in July. It is the most devastating thing to go through. Do you feel comfortable telling us a bit about what happened?
Thank you, it is – I wouldn’t wish this on anyone. I had a fairly uneventful pregnancy early on. I was smug about the absence of morning sickness and glad that we had managed to get pregnant without any trouble. It meant that we could tell my dad I was pregnant just before he died which was special. About halfway through the pregnancy I was put on medication for my blood pressure. One Friday, at 35 weeks pregnant I felt he was moving differently and my blood pressure shot up. I called my LMC right away and went in for a check. My blood pressure medications were increased, ultrasound showed bubba was doing fine and I had some samples taken for the labs. By Monday afternoon I followed up for the results and to say he was still moving differently. I was advised they had no concerns for my baby but they were worried about my health and could I come in first thing the next morning. I went in for my check up the next morning and when they pulled him up on the ultrasound screen I said “oh, he’s not moving the way he normally does is he!” Not yet realising that he wasn’t moving at all. As I started processing what I was seeing I think I was yelling “he isn’t moving at all” repeatedly. I screamed, “you are scaring me, say something. Is he alive? Is he alive? ” He said “I am scared too, I can’t find a heartbeat. There is no heartbeat.” The wail that came out of me was the kind of sound that could never be imitated. 

The post mortem was inconclusive but I did have two issues flagged with my placenta and umbilical cord.

What have you been doing to look after your mental health at this time? Who or what are you leaning on for support?
Me and Will, my husband, have been taking care of each other and luckily we both share a dark sense of humour so laughter has been a big part of getting through each day. Seeing a grief counsellor has been a big help. Walking, writing, pilates, meditation and nutrition have all been part of the survival kit. Does that mean I feel good? No, but it keeps my head above the water. 

Often when someone has a stillbirth, some of the people around them just don’t know what to do – they don’t know what help to offer or what to say, often out of a fear of saying or doing the wrong thing! Did you experience this? Did you find that some of the people you thought would be there for you, just weren’t?
Most people have been incredible. One person checked in on me to see how the pregnancy was going, I responded to say we had lost him and I haven’t heard from them since. That hurt. I could have done without two people sending us articles on covid vaccinations causing stillbirths too. 

The truth is that you can’t say or do anything to fix it so don’t try to figure out the ‘right thing’. If all else fails, just acknowledge that is it fucking terrible and that you don’t know what to do or say. 

Was there anything that people did or said that were of help?
Yes! People made decisions for us early on and that helped so much. We were in shock and even people asking “what can we do?” felt hard to answer. We had friends take over – they did the supermarket shopping, they came over and tidied for us, moved the baby things around the house out of sight while we were in hospital and updated people on our behalf. We held a memorial for him on his due date and our family friends catered it – they showed up with everything we needed and took it all away when it was over. We couldn’t have done any of it without them. 

If anyone out there reading this has a loved one going through this, what would you want them to know? How can they best support that person? 
I can only speak from my perspective but I had no idea how much it would mean to me to be asked ‘normal’ questions. The first time someone asked what my birthing experience was like I burst into tears. Even though Odie had died I still had my first experience of labour, I still delivered him. And I still wanted my girlfriends to ask me if it hurt, if I got a tear or if I pooped! 

We also have the most beautiful photos of him and I love it when people ask to see them. We want to be able to show our son to our loved ones, to say his name and decide what features of mine he has and which of Will’s. I would want people to know that his death doesn’t mean the entire experience is blackened so let us share the good. 

What has surprised you most about this journey and joining this club that no one wants to be a member of?
With no hesitation – the work of charities like Baby Loss NZ and Huggable Hearts. I can’t express how important the comfort we have received from them has been. We have hand and feet castings, a huggable heart made to his exact birth weight and professional photos of Odie and us in hospital. These are things that will comfort us for a lifetime.

Is there anything else you’d like to add or share?
Please don’t forget to acknowledge the dads. I was surprised at how often the medical community failed Will in those early days. His experience gets overshadowed by ‘the mother’s grief’. People in the hospital would say I am so sorry for your loss to me and completely ignore him. He is having his own experience and I think people can do a better job at supporting fathers through this loss. Thanks for sharing our baby loss experiences out in the open, right where they should be! 

It is a really isolating experience for all couples and for mothers of stillborns because no one had the chance to know our babies as well as we did yet. If there is anyone out there going through this who wants to connect with me, please do. 

You can be put in touch with Leonora by emailing [email protected]

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