'I used my grief.' Meet the mum changing the way hospitals treat pregnancy loss.

This story deals with the loss of a child and may be triggering to some readers.

Karen Schlage was overjoyed to discover she was pregnant in 2018. The 41-year-old public servant, who is based in Canberra, had been told her chances of falling pregnant were slim as her husband had recently been through cancer treatment.

"We had essentially decided not to pursue fertility treatment," Karen told Mamamia.

"Daniel was still not well and I was then 41 years old, so we wanted to focus on the two of us and what we had together.

"When I missed my period, I initially thought it might be the start of perimenopause but then I missed a second period and my breasts felt sore alongside some other telltale symptoms. I thought I'd better do a test and honestly it was pure shock and surprise - followed, of course, by joy - to discover I was pregnant after everything we had been told."

Watch: A tribute to the babies we have lost. Post continues below.

Karen was being cared for by a private obstetrician and from the start there were concerns about the way the pregnancy was tracking.

"I was told at a scan that my placenta was ageing, and they gave me aspirin to help. There were some definite worries, but I was waiting for the morning sickness to go and it didn't. I remained hopeful until 5:20am on October 11, 2018 when, at 15 weeks and three days’ gestation, my waters broke."

After Karen called the maternity unit, staff advised her that because of the gestation she should make her way to the emergency department. 

"I found out quite quickly that my baby Charlie had passed away. The emergency doctor told me that surgery would be arranged to remove 'products of conception', but this didn't sit well with me.

"I wanted the opportunity to labour for my baby and spend time with him, and I did not like not being given this as an option. I also felt this very clinical, medical language needed to change as you simply don't hear pregnant woman describe their baby as 'product.'"

Karen expressed her wishes to the doctor, who put her in touch with the obstetrics and gynecology team. They were supportive and gave her the induction medication to bring on labour but as she was just 15 weeks, the model of care is that she could not officially access maternity services, and was told she would have to remain in the ED.

"To some extent, I was lucky to be in the emergency department. Because so many women I have since spoken with actually miscarry in the waiting room toilets, still waiting to be admitted to the ED. But in the end a friend and retired midwife came in to advocate for me and after speaking with the nurse unit manager, she got me a private room on a surgical ward.

"I was then able to hunker down and focus on welcoming and farewelling Charlie all at once."

Medically, Karen says she was well cared for that night. A nurse came in to check on her and offer pain relief (which she chose not to take) regularly. A midwife from the hospital arrived just after Charlie's birth.

"She came to my room and brought a beautiful angel wrap, made by Angel Gowns Australia. She took Charlie's handprints and footprints and enabled us to experience some memory making which was really beautiful. We're so grateful to that midwife, but overall I felt that this was not the experience new grieving parents should go through."

Because Karen was not in the maternity unit, she could not have access to a cold 'cuddle cot', which are available in most maternity units for parents who lose a child after 20 weeks. It meant that Charlie had to be taken to the mortuary, and she only had the opportunity to hold him on a couple of occasions before she was discharged.

"That walk out of the hospital when you're leaving your baby behind? That's the worst walk - and I've done it twice. The thought of leaving Charlie behind wasn't one that sat well with us; it's just the worst feeling in the world.

"We were again lucky, though, that we had a friend who is a funeral director and so Daniel had spoken with her to understand what our options were, as there was no information provided to us about what we could or could not do. We weren’t even sure if a cremation could be held for such a small baby, but we have since learned that it is possible to have a funeral for a baby of any gestation, and that the funeral companies often do not charge grieving families."

Listen: This episode of Mamamia's fertility podcast covers pregnancy loss. Post continues below.

The next day while talking to her sister, Karen says that "a seed was planted" and she wanted to get involved in bringing about some positive change to help other grieving families in the future.

She spoke with the hospital directly to provide feedback and discovered that there was already an inquiry into maternity services underway in the ACT. She wrote and sent a submission in January 2019 and gave evidence in July 2019. 

It was around this time that Karen realised her second pregnancy - this time a baby girl - was also in trouble.

"On July 11, 2019, I gave birth to our daughter, Sophia, who was just 16 weeks and six days’ gestation, but this time it was a very different experience. I was admitted to the birthing suite, and they gave us the room that's prioritised for bereaved families. We had the most beautiful midwife looking after us who, right from the start, walked in and hugged me and said, 'I've got you.'"

"I knew straightaway that the load I was carrying was being shared by somebody who was just there to care for us and that made an enormous difference. That ability to go in knowing that I would labour and be supported right from the start, and there was just no discussion about surgery or 'products of conception', was a huge relief. 

"My enduring memory is of my beautiful midwife lying in a sunbeam and holding Sophia. The only reason I could leave that hospital and our baby behind was just knowing that somebody was loving and caring for her."

Karen says that the walk to leave the hospital - through the corridors of the birth suite, past crying babies and happy families - was incredibly traumatic. 

"I passed a room with a CTG monitor and could hear another baby's heartbeat, and then another room with a baby crying. And these are beautiful things in themselves, but when you're hearing that having just left your deceased baby? No family should have to hear the sounds of celebration when mired in the deepest grief. I nearly collapsed in the corridor."

Karen with Sophie. Image: Heartfelt Photography. 

Overall, Karen says that her birth experience with Sophia was much improved, but there were still aspects of it she felt could be improved to assist grieving parents. 

"Once I'd had the opportunity to properly grieve for Sophia, I engaged again with the hospital to give them feedback in terms of my experience and ways that we might change the care for women in the future.

"Things like giving grieving parents the option to walk out via staff exits as opposed to through the birthing unit make a huge difference."

Karen's amazing advocacy work and strength have helped bring about major changes in the ACT, and on Friday, a dedicated early pregnancy loss unit at the Centenary Hospital for Women and Children opened in Canberra.

Minister for Health Rachel Stephen-Smith of the ACT said the new Early Pregnancy Service unit is a dedicated three-bed inpatient facility offering care to women and pregnant people experiencing early pregnancy complications, including early pregnancy loss.

“There are approximately 500 admissions to Canberra Health Services each year for miscarriage or early pregnancy complications, but until now, there has not been a dedicated facility to provide this specialised care.

“It is a therapeutic, healing space where patients can receive the care they need from a highly skilled and multidisciplinary team. It will support overnight stays and, importantly, provides separate treatment spaces and a separate waiting area,” says Minister Stephen-Smith.

Karen's input and "powerful voice" were officially recognised by the minister, who thanked her for her continued advocacy.

Karen believes there is still plenty of work to be done in this space and she is about to head overseas to learn more about bereavement care after being awarded a Churchill Fellowship. 

"You never get over the grief of losing your child but I have been able to build myself and sort of change shape around that grief. This work [on the inquiry] has been really important as part of that, but I also volunteer with Angel Gowns Australia, and as part of the Churchill Fellowship I am about to go to the UK, US and Canada to learn more about in-hospital volunteer-run bereavement programs for parents."

Ultimately, Karen says her story is not all about loss, and that the births of her beloved Charlie and Sophia have brought about positive change.

"We can acknowledge that ours is also a positive story; we had the chance to birth our babies and to be with them, and to make memories with them even though they were already deceased.

"We had someone with us who knew what to do and how to guide us and advocate for us. We were able to formally say goodbye to our little babies, and now have their ashes at home. We are able to look back and say that we had some control in imperfect situations."

Red Nose provides vital bereavement support for anyone affected by the death of a baby or child. 

The Red Nose bereavement support line is available 24/7 on 1300 308 307.

Laura Jackel is Mamamia's Family Writer. For links to her articles, follow her on Instagram and TikTok.

Feature Image: Supplied.

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