I hear every day from women desperate to be heard, to have their horror stories told in the hope of helping others
When I started investigating lapses in care in early pregnancy loss, I had no idea how easy it would be to find patients to speak to. Even now, two years on, people who experience miscarriage contact me every day, desperate to be heard, seen, to have their horror stories told in the hope that it won’t happen to anyone else.
Every time I think I’ve seen or heard the worst of it, I turn a corner and there’s a story waiting for me that’s so awful it makes every hair on the back of my neck stand up.
When Guardian Australia published my story in September about how many Early Pregnancy Assessment Services in New South Wales are not meeting NSW Health’s own standards and the lack of oversight of care standards, the flood of emails and social media messages made it clear within 24 hours that this is a problem not limited to NSW. Not by a long shot.
Patients from almost every corner of this country came forward to tell me how their local hospital, EPAS clinic or GP had failed them during what many described as the worst time in their lives.
While some tell stories of compassionate, considerate and loving care, these are drowned out by the stories of medical lapses, dismissal, erasure and belittling, leading to a compounding of grief and significant, ongoing mental health trauma.
“I feel like a problem for the system,” says Marie*. “I feel like I’m inconveniencing people. The advocacy you have to go through for yourself isn’t fair.”
At eight weeks pregnant, Marie started passing large clots. Frightened, she went to the hospital. No one would give her a scan, not even the fetal monitoring unit, which won’t see patients until they reach 12 weeks. When Marie hit 14 weeks, she knew something was very wrong. When she tried to book an urgent scan on a Friday afternoon, a worker at the FMU told her: “We’re public servants, we only work nine to five.”
At 15 weeks Marie was told her daughter had died in utero. Her voice shakes as she describes arriving at the hospital to give birth. She was walked through the entire maternity ward before being put in the ward’s tea room while awaiting access to the birthing suite.
“I was by myself, in pain, surrounded by posters about breastfeeding, pre and postnatal support, an entire wall of pictures of babies and thank you cards, while mums are walking up and down the hallway with their new babies, their partners are getting them cups of tea … It wasn’t the place I needed to be at that point, when I’m about to lose my kid.”
Erin suffered through multiple miscarriages, each time seated in maternity waiting areas with heavily pregnant patients. Not once was she offered any psycho-social support or counselling.
Stella was told at 14 weeks her daughter Frankie had Down syndrome. She has nothing but positive feedback for the hospital’s genetic counselling service, which she says treated her with compassion and kindness. But before she could decide whether she wanted to proceed with the pregnancy or not, a scan at 16 weeks confirmed the baby had died in utero.
Distraught, she was then told she would have to go to the emergency department and start her hospital journey from scratch. She waited for hours in ED with no information, surrounded by pregnant women and newborns, only to be told upon admission that she would have to wait another week for a procedure to end the pregnancy.
Three weeks later, at 20 weeks, she was sent a text message reminder that she was due for her 20-week scan.
“There were just these ways that the system didn’t link up, they really let the whole experience down, which is a real shame,” she explains.
Anne had to sit in waiting rooms full of pregnant women, then describe why she was there over and over. No one had time to read her medical notes, and continuity of care wasn’t a priority.
“The fact that you have to go back and forth to a thousand appointments, there’s not just one person who can do it. You can’t just go see a doctor that you trust, and they do the scan and they confirm it to you. It’s also really difficult when you’re in the middle of that to share that experience with so many strangers.”
When June experienced an ectopic pregnancy, she was told it would be removed with a laparoscopy, where the abdomen is inflated and then a surgical procedure takes place.
“It’s where we blow you up with gas as though you’re at 40 weeks,” explained the attending male registrar, in between cracking jokes with the attending nurse. “It just seemed tone deaf at the very least,” June says, “if not actively cruel.”
When she started to miscarry at 12 weeks, Elsa attended an emergency department. She waited for several hours, watching people with minor injuries being sent through for care. She was then told it would be another three to four hours for someone to see her so she left. She miscarried her daughter Lucy at home in the shower that evening. In a panic, totally unsure what to do, she put her daughter in a container and put the container in the freezer.
She contacted a private specialist the next day and was told to come in immediately. He examined her and found that the placenta was lodged in her cervix. Had Elsa not pursued medical care, this would have led to a serious complication.
Later, when they went to a funeral home to have Lucy cremated, the family was turned away and told they needed a certificate from the GP because the funeral home “couldn’t confirm they hadn’t committed a crime”.
Each year, about 57,000 Australians have heart attacks and 28,000 kids end up in hospital with broken bones from playing sport. Somewhere between 100,000 and 150,000 Australian families are affected by miscarriage.
According to a research paper in the medical journal the Lancet, the psychological consequences of miscarriage can be anxiety, depression, post-traumatic stress disorder and suicide. Those who experience miscarriage can be at risk of preterm birth, fetal growth restriction, placental abruption and stillbirth in future pregnancies. It can also be a predictor of things like cardiovascular disease and venous thromboembolism.
The time has come for medical and allied health professionals to make some decisions. We cannot on the one hand acknowledge that miscarriage is the most common pregnancy complication but equally be so bad at treating it and caring for those who experience it.
It’s long past time to make people who experience miscarriage feel heard, cared for and most importantly be given back their dignity.
*Names have been changed to protect privacy