Miles Apart. Annabel Bower

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.

      Chapter 4 A devastating diagnosis

      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