Читать книгу Miles Apart - Annabel Bower - Страница 6

From the very beginning, I felt like my pregnancy with Miles was doomed. I know it sounds dramatic, but I had a strange feeling that something was wrong, which I voiced over and over to Josh. I started bleeding at nine weeks and was convinced it was all over. I was getting ready to go out for dinner with a bunch of girlfriends. Dressed and ready to go, I went to the loo just before leaving and saw the tell-tale signs of bleeding. My heart immediately sank. There is very little that can calm the nerves of a pregnant mother who has discovered she is bleeding. I wanted to stay home, but felt rude pulling out at the last minute. (I used to often worry about being ‘rude’ – that is one thing that has completely left me since I lost Miles.)

Thankfully, the bleeding stopped after a day or so. A scan showed that the yolk sack was full of blood and I was assured that this was not unusual and certainly nothing to worry too much about. Despite being told that everything was fine, I kept thinking that at any point, something terrible might happen. Every time I went to the bathroom, I expected to see blood. I had another new obstetrician, as the one I had with Bonnie had now retired. My new guy seemed nice, fairly relaxed and didn’t seem overly concerned about my history of IUGR. He felt it was something we could talk about later if the need arose. I tried to be cool and adopt his ‘take it as it comes’ approach, but it did nothing to calm my nerves, which were on high alert after the bleeding.

We opted for a Harmony test, as well as the standard nuchal translucency screening and blood tests at twelve weeks. I wanted to reassure myself in every way possible. I was convinced we were going to receive bad news, but both sets of test results came back clear, with no issues detected. I rang the midwives to chase up my results, as I was desperate to know what they were. I asked the midwife on duty if these tests ruled out all possible issues. She said the twenty-week anomaly scan would show anything major, however it was very rare to encounter anything significant at that later stage, after our early, clear results.

Even after we received these good results at thirteen weeks, we didn’t announce the pregnancy to the world. I was strangely self-conscious about having a fourth baby. A lot of people said things like, You’re brave or Better you than me. I was sick of having to respond and wished people would just wish me well, without judging. To put it less politely, I wished people would mind their own bloody business! People also commented on the fact that Bonnie’s pregnancy had been high-risk and asked if we were worried it would happen again. I wanted to answer, “Yes of course we are!”, but I usually brushed them off with false optimism instead. I only told really close friends, and let the news filter out to others organically, hoping to avoid having similar conversations over and over. Even by eighteen weeks, I had people coming up to me saying, I only just heard from so and so that you’re having another baby. Wow! You’re brave!

As far as pregnancies go, apart from the bleeding at the start, it was pretty standard. Crushing fatigue, ever-so-glamorous constipation, and a raging addiction to Ben and Jerry’s Phish Food ice-cream. The first flutters of movement were magical: that delicate whoosh and the first tentative little kicks began at about sixteen weeks. I was still nervous, still worried something was wrong, but the movement signaled that the baby really was there and was growing well. By about nineteen weeks, I was starting to feel confident that it would be okay. My bump was bigger than it had been with Bonnie, so I felt that this baby was growing well. People pointed out that I wasn’t looking very big, but I’ve never had a big bump. I hadn’t announced the pregnancy on social media and thought that perhaps I would announce it publicly after the big twenty-week anomaly scan.

I booked the scan for my birthday, for no reason other than it was my only kid-free and work-free day that week. The previous two weeks had been sheer chaos, with end-of-year school concerts and Christmas catch-ups. Work was also very busy in the lead-up to Christmas, so I thought it would be nice to get all of that behind me and head into the scan with a clear mind. I felt like I should start to make some effort to enjoy these milestone moments of my ‘last’ pregnancy. I’d been too nervous to relax and cherish it before now. I had forgotten to book the older boys in to vacation care, (school holidays had started the week before), and rang to organise it that morning, only to find it was fully booked. I rang Mum, but she had an appointment, so the boys couldn’t go to her house until later. They were old enough to come to the scan and understand what it was all about, so I thought, What’s the harm? I’ll drop Bonnie at day care and bring the boys along, they’ll love it. They could go to my mum’s later, when I needed to do some client work.

The excitement of being allowed to come to the scan was evident on their little faces. When the baby’s tiny form was projected on the screen, Ted said the baby looked like a duck face and kept asking the sonographer to tell him if it was a boy or a girl. I reminded him that we’d decided we weren’t going to find out the gender this time. Ted was desperate for a boy. He’d conjured up this entire fantasy about he and his baby brother being the ‘annoying ones’ and ganging up on his older brother Alfie, together annoying the hell out of him. Ted had written letters to the baby and drawn pictures, saying how much he was going to love it and could it please be a boy, named Tom, after his best friend. When we’d told the boys that Bonnie was going to be a girl, Ted had burst into tears and yelled, “Change it! Ask to swap, I asked for a boy baby”, to which we replied, “You can’t change it Ted, it is what it is. There’s no one who you can go to to change these things.” Ted responded, “Yes there is, talk to the man, there’s a man for everything.” This became a running family joke and every time someone wants something impossible done, we say, “ask the man, there’s a man for everything”.

Between Ted calling the baby duck face and yelling out, “It is a boy, I’ve seen its willy!”, (which was totally made up), the scan was not your usual calm, quiet one. Even the sonographer got the giggles and I had to breathe deeply and try to stop laughing, so she could capture the pictures she needed. I thought this distraction, along with Ted’s constant interruptions, was why it was taking so long. At about the fifty-minute mark, she asked if the boys could go to the waiting room to watch TV. I instantly felt alarmed. Sensing this, she told me there was a problem with the baby’s brain and she needed to call in the supervising radiologist to review the images. She was openly upset and deeply apologetic about the limited amount of information she was able to give me. I felt an overwhelming dread and hopelessness. The room was suddenly ice-cold. A few minutes before, Alfie and I had been pointing out the baby’s fingers and toes to each other, while Ted was shouting out, “There’s the willy!”. In an instant, we had gone from utter hilarity to eerie silence. Shaking, I called Josh. After three previous pregnancies, I knew that the sonographer’s response meant this was not an ordinary problem: this was going to be bad. I asked Josh to collect the boys, run them over to Mum’s and head straight back.

I sat on the edge of the bed, alone, holding back tears, waiting for the sonographer to return with the radiologist. Each ten minutes felt like an eternity. I have no idea how long I actually waited. I was supposed to meet at a client’s office to do some photography work at midday, so I texted to tell her I’d be late, even though I doubted the news would be good and knew I might not make it at all. When the radiologist arrived, he looked crestfallen. He was young, softly spoken and incredibly kind. He told me their equipment was not high-grade enough and I would be referred to an obstetric clinic specialising in level-two scans. As this was not his area of expertise, he would contact my obstetrician and organise the referral. The sonographer asked if I wanted her to load the baby’s images onto a DVD. She could barely look at me. When she brought the DVD to me fifteen minutes later, I could tell she had been crying. She started crying again when she saw me, apologising for having to deliver such devastating news. At this point I didn’t have a clue what was wrong with our baby, but could only assume that it was pretty bad.

Josh returned from dropping off the boys just as I was leaving the clinic. I couldn’t speak, so he rang my obstetrician’s rooms to ask them to book us in for the next scan as soon as possible. My doctor was in surgery. His staff said the soonest available scan was in two days. There was no way I could last that long not knowing what was wrong. I cancelled work, left the boys at my mum’s, went home and cried. It was all I could do. Nothing could distract me from my worries and the tears wouldn’t stop.

That it was my birthday was now irrelevant. I could barely stop crying, let alone contemplate celebrating. Darling Josh had other ideas: he had collected the kids from Mum’s and nursery school, and had taken over the kitchen in a flurry of festive industry. Cocoa was flying everywhere, eggs were being cracked and chocolate souffles were made. I could barely eat. Every scrap of energy I had was directed at acting as normal as I could for the kids. I felt like I was watching my life from above. I was so grateful to Josh for his ability to keep it together and carry on as normal. I couldn’t wrench my thoughts away from the news we’d received.

Our obstetrician didn’t get in touch with us until quite late that evening. He explained that at the next scan I would most likely be offered an amniocentesis and what they had seen was an issue with the brain, the ventricles of which were severely enlarged. He told us not to be alarmed, that this was relatively common. In the same breath, he mentioned that at the next scan, they may talk to us about ending the pregnancy if the baby was deemed to be incompatible with life, at risk of severe disability or diagnosed with a life-limiting condition. We were both floored. Not only to receive this crushing information over the phone, but to also try to digest it without having any real idea of what we were dealing with or what the complications identified in the baby’s brain might entail.

The next day I was booked for a longstanding lunch with a group of women who, like me, work from home or for themselves. It’s our annual tradition to have our ‘work’ Christmas lunch together. I didn’t think I could sit through a festive lunch, chatting about the year that was and future plans, but Mum suggested I take any distraction I could. Looking back, it is the last time I can remember being completely my old self. Since losing Miles, I feel heavier, more fearful, less free. The girl who slapped on a smile and went off to lunch is still there, but she’s eternally changed. Once you experience just how wrong life can go, you’re never quite the same again. This is not necessarily a bad thing. Once I emerged from the initial, crushing stages of grief, I was far more empathetic to others facing difficult circumstances and far less preoccupied by insignificant daily worries and frustrations. Grief helped me see the bigger picture and focus on what really mattered.

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 I was clearly distraught and desperately seeking information.

I rang my friend Anna who had lost her baby ten years before. She suggested I ring a woman she knew who had lost a baby due to a brain abnormality nine years ago. Her friend’s first baby had been diagnosed as incompatible with life and delivered at twenty-five weeks. I rang and told her all that I knew so far. She was shocked that I hadn’t been called into my obstetrician’s rooms or offered any counselling. She gave me the number of the head of genetic counselling for fetal abnormality at the Women’s and Children’s Hospital and suggested I call her first thing Monday morning for advice. She also suggested I change obstetrician as soon as possible. Throughout her heartbreaking diagnosis and subsequent loss, her obstetrician had supported her, met with her, hugged her and offered endless compassion. I was terrified of the road ahead but knew that the next step was to change doctors as soon as possible. My mind swung from believing with certainty that our baby would be okay, that he or she would be miraculously spared from this horrible twist of fate, to knowing that was a fantasy, and that our lives would never be the same again. I was already worried about how we would cope. How does anyone cope with the loss of a much-wanted baby? I thought back to when I was bleeding at nine weeks. When that happened I had thought, Please not me. Please god, the universe, whoever controls these things, spare ME, spare my baby. I thought I couldn’t possibly cope with that kind of heartache. Now, these feelings returned, with a new intensity. I have been close to two women in my life who have had stillborn babies, so it was not a foreign concept. I had seen first-hand just how devastating it was. I knew from listening to their experiences that it was something that stayed with you forever, a loss you never got over. I didn’t think I had the capacity to deal with it, but understood I might not have any choice in the matter.