Life After Loss: Deana’s Story
Warning: Infant Loss
Deana Johnson has been to hell and back. On July 17th after a long and difficult labour, Deana suffered a ruptured uterus. While the surgeon was able to save Deana’s life, her pēpi did not survive. Her name was Aurora, and her māmā is sharing her story, in the hope that it might help other hapū māmā, and māmā who have lost pēpi.
“If you have previously had a C-section please do your research on uterine ruptures and make an informed decision from there. Please listen to your obstetricians if you decide to opt for a vaginal birth and get to the hospital ASAP.”
You can find Deana and Aurora’s full story on Deana’s Instagram @deanaranajohnson
The interview that follows, discusses what has happened since that day.
Kia ora Deana,
So, to begin, how are you?
I receive this question often and I’m never sure if people want to hear the real answer or not. Most of the time I answer with “I’m doing OK” and some days that is the truth but most days I am overwhelmed with sadness and when I am happy I feel guilt for feeling joy.
What has the past month looked like, since Aurora passed?
The past month all I’ve been trying to do is survive, hardly leaving the house because I’m scared to bump into someone who may ask where Aurora is. I’m really just taking it day by day trying to be the best māmā I can be to my big girl. Grief is exhausting so it hasn’t been easy, but I do it all for her.
Aside from whānau support, what support have you received?
I have found so much support in connecting with other loss māmā online. Unfortunately, there is a big community of us out there but it really has been a vital part of my healing as we all know what each other is going through and we’re all able to validate each other’s feelings.
My partner and I have also been offered counselling but I’ve decided it isn’t an avenue I’d like to pursue at this time. For me personally, I don’t gain comfort or like taking advice from anyone who hasn’t been through child loss and doesn’t know exactly what I’m going through.
How could you be more supported? What could / should people do to care for whānau who have lost a pēpi?
Personally I have been really lucky and well supported with whānau and friends. In terms of help from the system I don’t really want it because it’s a trigger for me. The doctors, the midwifes, the hospital, it all just brings back trauma from the night we lost our little girl.
Tips for anyone who knows someone who has lost their baby: be there for them and send them messages often without expecting a reply. They will appreciate the thoughts but sometimes won’t have the energy to respond to the overwhelming amount of messages. Send food/supplies that they may need. As much as we don’t feel like eating, we still NEED to eat so kai is a really big help. Talk about their pēpi, there is nothing worse than people acting like they never existed. Don’t avoid talking about them to make yourself feel comfortable. Also message them whenever something reminds you of their baby, i.e. a symbol, rainbow etc. Whenever people message and tell me they saw a sunflower, or they have seen the sunrise and thought of Aurora it fills my heart x.
What made you want to share your story?
What happened to me, I believe, was avoidable. Had I had the right people delivering me the right information in the right way my baby girl would still be here. I failed to do my own research and it eats at me every day. If I had read a story like my own maybe I would’ve erred on side the of caution and Aurora could’ve had a fighting chance. I’m sharing my story in the hopes it encourages other māmā to ask all the right questions, especially if they’re a high-risk pregnancy, and to do a little more research before making any decisions on their birth plan. I want to save as many families as possible from this tragedy ever happening to them.
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On IG you explain that you didn’t know about the risks associated with a vaginal birth, after a c-section. What could have been done better?
Like I said above I believe the OB and midwife should’ve delivered the information to me in a better manner instead of being so lackadaisical. They both installed so much confidence in me that I didn’t have a fighting chance. The talk of uterine ruptures was almost brushed over to have that tick in the box to say that I had been made aware. The outcome is catastrophic so why aren’t women, especially those so soon after a c-section, not made aware of the totality of uterus ruptures? They highly recommend waiting 18 months after a c-section before getting pregnant again. Why is this even a recommendation if they are then not going to consider you to be a high risk being anything less than 18months post c-section? The regulations need to be looked over and systems need to be put in place to let every māmā know the risks of giving birth naturally so soon after a c-section.
If there was one thing you wanted other whānau to know about your loss (and loss in general), what would it be?
Our grief doesn’t go away the moment we bury our babies. The trauma is with us forever and often we can be quite irritable due to the grief and we can’t control it so please be patient and understanding.
After posting your story on Instagram, have you had a lot of people message you? Share their own stories etc? If so, what’s that been like?
Yes, I have had an overwhelming amount of māmā message and share their stories with me and I am angry. Sad and angry that our healthcare system is letting so many of us down. We should all have our babies in our arms right now 🙁
Is there anything whānau at home can do to honour Aurora? (Is there a charity you’d like people to know about for example)?
Speaking her name often and remembering her whenever they see and the sun rising in the morning and setting in the evening.
There is also a charity called Huggable Hearts who create fabric hearts weighted to the birth weight of our Angels. It is a very special gift for loss māmā and whānau who are coping with infant loss. If you know of anyone who may need this for extra support through their grief please let them know x
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