Ironically, when he called back later that evening with our MRI results (which had already been given to me hours before our obstetrician’s first phone call, by the doctor in the MFM department) he gave us his most understanding and informative update so far. But by now, we had lost faith in him. The person we had been counting on and looking to for guidance had been truly disappointing and unprofessional. He had still not made any effort to meet with us and I wanted nothing more to do with him. I felt especially angry that even though he knew I had quite recently suffered postnatal anxiety after Bonnie, he not once asked how I was coping mentally, nor recommended any counselling services.
My father-in-law, a retired surgeon of forty-five years, offered his opinion when we told him about our experience: “He’s a B-grader and should be reported.” He was appalled that we had not yet been seen in person and suggested I make a complaint to the Australian Medical Association. But I knew I had bigger battles ahead, which deserved my energy far more. I did, however, write the obstetrician a very long letter explaining how and why I felt he had repeatedly failed us as our doctor. Given the seriousness of our baby’s condition, I felt we should have been an absolute priority and seen immediately. I shared some recommendations on how to handle any unlucky couples he might encounter in the future, facing similarly gut-wrenching situations during their pregnancies. I kept imagining first-time parents encountering him, being pushed aside and insensitively handled during a deeply traumatic time. It had the potential to do lifelong damage.
He replied over a month later, after I’d had to ring his rooms to check that he had received and read my letter. He said he usually did bring patients into his rooms with cases like ours and wouldn’t go into the reasons he didn’t with us, as they would simply sound like excuses. He went on to say that my appointment with my GP to seek a referral for MFM was unnecessary, as he had already organised one. This had never been communicated to us. Without adequate communication from our private obstetrician, I still believe we had no choice but to take matters into our own hands. When I rang the MFM department to clarify the issue of the referral, they said that no written referral had ever been received other than the one from my GP.
I have not replied to him and never will. I will also never regret my course of action: I did what I needed to do for my baby and my own sanity. I needed to feel that I was in a position to find out every possible skerrick of information about our situation. My actions were also influenced by the outstanding medical care I had received at other times throughout my life. Doctors who had sat with me and carefully explained diagnoses and outcomes. Doctors within my own family and social network, who I know to be incredibly caring professionals who would never relay this kind of information by phone call alone. Anyone facing a trauma of this magnitude deserves to be treated with enormous sensitivity. At the very least, their doctor should urgently make time to discuss their situation in person.
The medical world can be intimidating and scary, especially when you’re in great distress. We are taught to respect doctors, as we are teachers and other people in positions of authority. It can be daunting to stand up for yourself in this kind of environment. If you are being reasonable and not acting out of anger, it is your right to ask for a second opinion, or to change doctors if you feel you are not being heard. Nothing in this world is more important to a parent than their child, so we should never be afraid to go to whatever lengths necessary to get the answers we need. Many people will receive the tragic news that their baby has no heartbeat, or face a similar scenario to ours, which was weeks of tests, investigations, and an initially uncertain outcome. Others will receive a comparatively early diagnosis of a congenital abnormality after routine testing at twelve to fourteen weeks. They are all heartbreaking, unexpected and have the same outcome: empty arms. I assume that most mothers are heading to scans or appointments with great excitement, naturally anticipating good news and a chance to see how much their baby has grown. The joy of seeing your baby and its progress instantly evaporates if unexpected bad news is delivered. And this occurs in a foreign, sterile environment surrounded by strangers. The way bad news is delivered is so important.
Some women start to miscarry at home or at work, which I imagine would be confronting and terrifying in equal parts. They then need to seek medical support. How they are received and treated can have a huge impact on how they cope with the grief ahead. I started grieving my baby during the first scan, from the very second I realised something was wrong. This was just the beginning of an incredibly difficult time, which is why it is crucial that women (and their partners) are cared for by professionals who understand just how devastating baby loss is, and respond with adequate empathy. It’s a scary mix of raging hormones, shattered dreams and broken plans – a time where grief and trauma collide head on.
Chapter 5 A ‘decision’ that is not a choice
That week, we were in the midst of a heatwave. Josh hates hospitals. They make him incredibly uncomfortable and I’d make a guess that if he never has to enter another one for as long as he lives, he’ll be a happy man. Sitting on the sticky vinyl charts in the Maternal Fetal Medicine waiting room, flicking through the year-old gossip mags, avoiding eye contact with other terrified parents, Josh looked like he wished he could be anywhere else. We both did, because we wanted our baby to be okay, to be told to go home, that it had all been one big mistake.
The head MFM doctor explained our baby’s condition to us in great detail. We were taken to another department in the hospital straight after, to meet with a neonatal neurologist. The neurologist was very clear: our baby basically had no chance unless the clot blocking the ventricles moved of its own accord. The damage from the hemorrhage and the swelling was likely to be irreversible and could indicate incompatibility with life. At this stage of pregnancy, important brain development was occurring, which our baby would miss out on completely. If it had been later in pregnancy, early delivery followed by surgery may have been an option, but at our baby’s gestation period, it would not be strong enough to go through that.
The outcomes were bleak: our baby’s situation was like that of an adult who had suffered an aneurysm and was being kept alive by a life-support machine. In our case, the placenta was the life support machine. Once removed from it, the baby may not survive. The doctor could see how torn we were by the diagnosis. He suggested we come back in a week, after Christmas, for one final scan to see if anything had improved. We would also have the full results of the amniocentesis by then. I think he could see just how painful this ‘decision’ was for me and that we needed time to absorb what had been explained to us so far. Josh, ever calm and practical, kept telling me, “You are not choosing to do this, you are simply acting on the cards you have been dealt.”
I hadn’t told friends what was going on. Lots of people had called for my birthday and were looking to catch up for a pre-Christmas drink (a non-alcoholic one for me obviously). I was ignoring them all. I couldn’t bring myself to talk to people, let alone socialise. Telling people would make it real – and I wasn’t strong enough to encounter adverse opinions. Being forced to ‘decide’ whether to terminate a pregnancy that’s likely to result in a child that is incompatible with life is still an unspoken and taboo area of baby loss. And I still feel uncomfortable with the topic at times, even though I have lived it.
Christmas, like my birthday, felt completely hollow. We had organised well in advance that the boys were going off to their dad’s at noon on Christmas Day, and they were going to stay with him for two weeks. The morning was full of great excitement: the opening of Santa’s presents, the discovery of new bikes and the sheer joy that Christmas is for kids. I watched the boys whiz around the front driveway on their shiny new bikes, with Bonnie trying to keep up on her scooter, and felt completely dead inside. I couldn’t soak up their happiness, I was so broken and empty. I felt like the grim reaper was hovering over me, waiting to snatch this precious baby away from our family before we got the chance to meet him or her. Sitting on the front step, I started crying.
“Why are you crying Mum?”