Читать книгу Miles Apart - Annabel Bower - Страница 7

The weekend was a blur, the end of the year was hurtling towards us. I wanted to make sure Christmas, a little over a week away, was as magical as it had always been for the kids. Christmas presents were bought and wrapped, and Santa sacks were stuffed early, in case I couldn’t do it later. I knew that unless a miracle occurred, we had some very tough times ahead. If the worst happened, I would not be out buying presents, making ice-cream puddings or taking part in our usual Christmas traditions. I was laying low, avoiding friends, refusing all invitations and screening phone calls. I couldn’t talk about what was going on. There was no way I felt remotely ready to discuss what I knew, and I was so uncomfortable with the idea of interrupting a pregnancy, even if the MRI did determine that our baby was incompatible with life, that I felt too ashamed to talk about it with anyone. I was scared of being judged, that people might see it as a choice – though of course, it wasn’t a choice at all.

Over the weekend I contacted a school mum who was a radiologist at the Women’s and Children’s Hospital. I wanted to learn as much as I could about our baby’s condition. She explained that the MRI would give us more information, but I also needed to be aware that if the swelling continued, the baby’s skull could increase in size. This would put me at risk of uterine rupture (spontaneous tearing of the uterus, causing the baby to slip into the mother’s abdomen), which was life-threatening. I’d had no idea. I also spoke with my husband’s uncle, a pediatrician, who helped shed some light on the hydrocephalus diagnosis. He explained that some babies born with this condition can be treated with a shunt after birth and go on to live normal lives, but this was usually only successful with milder cases that began later in pregnancy. Given that ours was considered severe so early on, our chances were not so great. I found it incredibly comforting to talk to as many people with some experience or expertise as possible, and gather as much information as I could – though of course, they didn’t have my case notes, so couldn’t review my specific situation.

Monday loomed. I couldn’t sleep and everything upset me. An old friend of Josh’s suggested to him that “perhaps it was for the best”, that finding out now that the baby wouldn’t survive birth, or would have severe disabilities and no quality of life, was a ‘silver lining’. In hindsight, I can see that he was trying to look for a positive, to give us comfort in some way, but his comments hurt me deeply. When you’re potentially facing the death of a child, you see no positives, no silver lining. There is no ‘at least’. I wanted my baby, this exact baby, the one I was carrying. I wanted this horrible situation to disappear, and in no way did I feel that finding out now was a good thing. To me, it was simply a death sentence. It did not alter the heartache that would inevitably follow or make my child’s life any less important or valuable. The comment implied, It’s a dud. Best to know now and get rid of it sooner rather than later. It made me feel even more apprehensive about sharing the full story, in case people didn’t get it. We were not making a choice or taking the easy option; we were also not dealing with a straightforward diagnosis.

On the day of the MRI, the thought of not getting enough data for meaningful results terrified me more than going through the procedure itself. I was worried that I’d move too much and they wouldn’t be able to get clear enough pictures. I was so desperate for results that I barely breathed while I was in the machine. Straight after the MRI, I rang the senior genetics counsellor at the Women’s and told her my story, explaining my dismay at the (lack of) care we’d received from our obstetrician and asking her if she felt it would be appropriate if I were to go to my GP and seek an urgent referral to the Maternal Fetal Medicine department within the hospital. She agreed it would.

My GP not only read the reports from my scan on Thursday, but also sat with me, hugged me and said the words I was desperate to hear. “Annabel, this baby is loved and whatever decision you make is the right one.”

I’m very lucky to have had the same GP for over twenty years. She knows me well and had helped my through all of my babies, divorce, postnatal anxiety and so much more. I had been feeling like an utter monster, akin to a murderer, that we were having to consider not continuing with the pregnancy. Her words reassured me that anything I did next was out of love for this baby. She told me that this baby may never make it so as much as I felt I might have to ‘choose’ to not continue, the ‘decision’ may have already been made for me. She told me there was no wrong or right decision; whatever we did next was the best thing for this baby and our family.

A referral to Maternal Fetal Medicine (MFM) was faxed immediately. The relief I felt was enormous. An obstetricspecialist from MFM rang me soon after, at about 1pm, with the results of my MRI. She was incredible. It was like there was an angel at the other end of the line. This warm-hearted young obstetrician instantly put me at ease. She explained that yes, the baby’s condition was very serious. The MRI showed that the baby had suffered a brain hemorrhage and as a result there was a blood clot in the third ventricle, which was causing the brain to swell dramatically with CVS fluid. They felt that this was indicative of a syndrome called NAIT or F-NAIT, in which the mother’s antibodies attack the platelets of the baby, which carry the father’s DNA: maternal antibodies perceive these to be a threat. As a result, platelets are diminished and the baby can have dangerous internal bleeding. In the most severe cases, this can occur in the brain. The condition is rare and not routinely screened for. Given that the boys were from my first marriage, it was thought that during Bonnie’s delivery, blood from the placenta might have crossed with mine, and my body had registered the foreign DNA.

This was a bombshell, but also an answer of sorts, which is what we needed. She said I could come in for an appointment as early as the next day, or wait two days and be seen by the head of the department. I opted for the latter. The boys were spending the day at our friend’s house on Wednesday and I’d booked a nanny for Bonnie, so I felt happy to wait one more day, knowing I had the kids sorted and would be meeting with the head of the department. I collected the boys from vacation care Monday and took them to their swimming lessons. Anna, my friend whose first son was born still, ten years before I gave birth to Miles, was there. Her children had their lessons at the same time as mine.

We sat and talked and I felt almost normal for an hour. Talking to someone who has been through the confusion and devastation of a bad diagnosis in advanced pregnancy is incredibly liberating. You can say anything – there is no judgement, no filter necessary, just complete empathy. I felt almost normal for an hour. Anna has been my biggest support since this began unfolding, and still is.

I told her that I felt like my obstetrician had been a complete asshole. Because we are mature adults, we changed his name to something unmentionable in my phone. He happened to ring while I was sitting there, and we fell about laughing hysterically as his new moniker flashed up. I let the call go through to message bank, not wanting to talk to him while I was out with the kids, and without Josh. I realised that no matter what lay ahead, I would laugh again. I would need to surround myself with people who understood and not let the darkness overshadow everything.

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.