A day later, Thursday 13 December, we were sitting in the waiting room of the scan clinic. Tears fell unchecked down my face. I kept looking at the other women and their partners, their seemingly healthy pregnancies, and thinking, I wonder if your baby will make it. Will mine be the only one that doesn’t? The scan took about forty-five minutes. There was no chit-chat, no polite questions about what names we were thinking of, or how old our other children were. It was straight down to business. I stared at my baby bobbing about on the screen, trying to take in every detail, but simultaneously thinking, Don’t get too attached, this is unlikely to end well. I was wishing like mad this scan would dismiss all of our fears, that we’d be told to head home and have a Merry Christmas, with nothing to worry about whatsoever.
Towards the end of the scan, came the inevitable line: “I’ll go and check with the radiologist on duty to see if we need any more images”. The sonographer left the room. I knew instinctively. Josh reached out and held my hand and the tears started flowing again. The head radiologist came in and said, “I’m so sorry, there is something very wrong with your baby. The brain is hugely enlarged and there is also a heart defect, which I think indicates a syndrome”. We were told that the next steps involved an amniocentesis right there and then, and a fetal MRI at the Women’s and Children’s Hospital in the city, as soon we could be booked in.
We were asked to sit in the waiting room while they prepared a room for our procedure. We were handed a coffee voucher for the adjacent cafe and I thought, Are they mad? Coffee is the last thing I need. And is there somewhere more private we can sit? I was nervous as all hell about the amniocentesis and wished we didn’t have to wait amidst the hustle and bustle of the clinic.
After the amniocentesis, I went home and put myself to bed. Just for something different, I cried and cried, and cried. I was glad the boys were at their dad’s; I couldn’t have cared for them in any way, after the day we’d had. Josh collected Bonnie from nursery school and we muddled through the evening routine, waiting to hear from our private obstetrician, who would relay the results of the scan to us in detail. This was the standard procedure, as he was the referring doctor. He didn’t call until 9pm. That call remains probably the worst medical care I’ve received in my life.
He told us he hadn’t yet read our report or seen the actual scans, as he hadn’t been back to his rooms, but he had spoken to the radiologist who’d reviewed our scan and performed the amniocentesis. He relayed her opinion, which she had given to him over the phone, that “if it were her pregnancy she would not consider continuing with it”. We were floored, not only to hear this devastating statement, but to also be given such harrowing, life-changing news over the phone. To this day, I cannot understand why we were not called into our obstetrician’s rooms late that afternoon or first thing the next morning, to be supported through this shocking turn of events in person. Josh asked him to call again in the morning, once he had read our report and seen the scans himself.
During this short phone call, he asked us what we thought we would do given the diagnosis – would we end the pregnancy? We replied that we had no idea, as we didn’t yet have adequate information with which to make a decision. We didn’t know what the diagnosis meant, but the comments of the radiologist filled us with despair. Josh said that with three children to care for and support, we would have to think very carefully about what we did. To bring a child into the world who was so severely disabled that they would need round-the-clock care to breathe, eat and stay alive would obviously impact our other children. If our baby could survive at all. If the damage was so extensive that it could not be reversed in any way, there was a possibility that the baby would die before or shortly after birth. All of this was still unknown.
I couldn’t speak. Naively, I had never heard of ending a pregnancy so late into the second trimester. It went against every fibre of my being and I felt so disturbed by it, I was physically ill. It was not a ‘choice’ I thought I would ever face, or a decision I would have to make, my mind was having enormous difficulty processing it. I hoped with all my heart that the next step, an MRI, would give us a good result or more information about the severity of our baby’s condition. The idea of making a decision to interrupt a pregnancy based on a second-hand opinion of one doctor, relayed over the phone by another doctor, was quite simply ridiculous. I needed every tiny bit of information I could get my hands on before even embarking on the ‘decision’-making process.
Our obstetrician called back on Friday morning to let me know I had an MRI booked in for Monday at 9am. He told me that he’d read our report and it diagnosed ‘severe hydrocephalous’ resulting in squashed brain matter, and that the baby had a possible heart defect. He didn’t elaborate in a meaningful way about what any of this meant, but told me to try to enjoy my weekend. By this stage I was starting to realise that we were in the care of an obstetrician who severely lacked compassion, and had an atrocious bedside manner.
When he had asked the night before what our feelings were on ending the pregnancy, I’d had no response, as I was shocked by the very notion of not continuing with a much-wanted pregnancy. To make matters worse, in the same breath he told us that if we were to ‘interrupt’ the pregnancy, it was not something he could assist us with, as he had made a decision earlier in his career not to perform terminations in any circumstances. I had read on his information pamphlet that he didn’t perform terminations after a first-trimester diagnosis of Down’s syndrome, but no other conditions had been mentioned. The pamphlet said nothing about his position on ending a pregnancy well into the second trimester due to a life-limiting diagnosis. Confused, I felt like I was being treated with disdain, that he was letting a personal moral judgment influence his actions as a doctor.
He went on to say that if we chose not to continue with the pregnancy, I would be handed over to the Women’s and Children’s Hospital and I would, considering my gestation, be induced to deliver the baby naturally in the care of midwives. He made no mention of handing me over to the hospital’s Maternal Fetal Fedicine team, or any specific obstetric department. It seemed that I would be cast out into an unknown system and left to deal with this alone. We felt lost, completely uninformed and unsupported. He showed no sensitivity or empathy towards us. It was as though he was washing his hands of an ugly situation that was not to his liking, and it made an incredibly difficult time even harder.
During his brief phone call on Friday morning, he said something along the lines of, “If the MRI results from Monday morning confirm what we’ve seen on the ultrasound, I could book you in to end your pregnancy as soon as that evening.” This was said without offering to meet with us to discuss our case, or arranging any counselling to inform us of the full implications of our baby’s diagnosis – and before we had received the results of the amniocentesis.
I decided it might help to speak directly with the female radiologist from the clinic, who had given the opinion that if it were her pregnancy, she would not continue with it. I wanted to know what had prompted such a strong comment. I rang her rooms and was told she wasn’t working that day. When I explained the reason for my call and the nature of the comment that had been passed on, the receptionist said she’d discuss it with the on-duty radiologist as, yes, she agreed that comment should not have been passed on in the manner in which it was.
The receptionist rang back later in the afternoon to explain that the on-duty radiologist was uncomfortable discussing the comment, as he had not been directly involved with our case. This was fair enough and I understood his reticence to get involved. He did contact our private obstetrician to discuss it and relay the fact that I had rung to talk through the comment and get some clearer information about our situation. Our private obstetrician still didn’t call us in to his rooms, though