The next day we turned up at the foetal medicine unit, on a floor of the maternity building we hadn’t been to before. After a short wait we were escorted into a scan room by a friendly midwife and doctor. There was our baby again, wriggling around and looking the picture of health. During the scan the atmosphere in the room was chatty and light-hearted, and I began to relax. Eventually a consultant also came in and introduced himself, before reviewing the scan images on a screen. I remember him pointing out something on one of the pictures to the doctor who had done the initial scan. Then he suggested that we move from the hot, cramped and windowless scan room to discuss the results, and we were ushered to a room next door.
I expect that most hospital departments have a room like this. A soft couch, low coffee table and inoffensive art work on the walls. As with everywhere during covid, a bottle of hand sanitiser sat on the table. What first caught my eye however, were the other objects on the table. Two boxes of tissues. This was clearly a Bad News Room. I didn’t say anything to my husband but my heart sank.
After a couple of minutes that seemed like forever, the consultant and midwife came back in and I braced myself. The consultant explained that it appeared that our baby had a blockage in his gut called duodenal atresia, where the stomach does not link up to the intestines. As soon as he said this he reassured us that it was correctable with an operation shortly after birth and that the prognosis was good. Then he explained that 1 in 3 babies who have this condition also have Downs Syndrome, and explained the options for testing to confirm this. As I was 29 weeks and the polyhydramnios meant I was at a higher risk of the amniocentesis causing me to go into premature labour, which would be even riskier than usual given the suspected blockage, he only recommended this if “the outcome would impact our decision making” i.e. if we would terminate the pregnancy if the baby turned out to have Downs. Although we were both apprehensive about what a baby with Downs would mean for our family, a termination at this late stage was something we couldn’t consider for a moment, and so we declined the testing. Neither my husband nor I recall there being any discussion of there being a higher risk of stillbirth in babies with abnormalities, if there was it was very much brushed over.
When the consultant left the midwife stayed and asked how we were feeling about everything, clearly ready to provide any support we might need. I remember wondering why - it was all going to be fine, the baby just needed a straightforward operation and it was still more likely than not that the baby didn’t have Downs. Looking back I clearly had a lot of denial going on at that moment. After a quick cervical scan to check I wasn’t at risk of premature labour we went home to digest what we had been told.
We were booked in the following day for a detailed heart scan to look for any issues which are common in babies with Down's syndrome. This was with two cardiac specialist doctors and it took ages, while they muttered medical jargon under their breath at each other about what they could see on the screen. By this stage I was also finding it hard to lie on my back for any length of time and so scans became fraught between me finding a comfortable position and the scanners needing me to move so they could get a good view of the baby. I just remember closing my eyes and focusing on my breathing while clutching my husband's hand for what felt like forever. Eventually it was over and the consultant confirmed that as far as they could see the heart looked healthy, which meant it was less likely our baby had Down's syndrome and that hopefully the duodenal atresia was an isolated physical issue.
We were also given appointments to come back every two weeks for further monitoring and additional scans. At every scan our baby boy was so active that it was sometimes a struggle for the medics to get the view they needed, which was always commented on. We joked that we were going to have our hands full with our super active boy. At this stage we hadn’t decided on a name, a tentative shortlist was a far as we had got.
The final scan was scheduled for Thursday ahead of my last working day on Friday, and the appointment also included a chat with one of the paediatric surgeons who would be in charge of carrying out the corrective surgery. The scan was quite brief compared to some of the earlier ones but again the baby was growing well and very active. The surgeon turned out to be a tiny softly-spoken lady in her fifties, about as far away from the stereotypical arrogant surgeon as you can get. We felt so reassured by her explanations of the process as she explained that her team liked performing this surgery as it was straightforward and generally had good outcomes. We went through the usual risks associated with surgery and left feeling like we were in good hands and expecting a two to three week hospital stay with our newborn, with no further issues when recovered.
We had shared the diagnosis with our families and close friends and I had told my manager and a close friend at work to explain the increasing number of hospital appointments. Throughout this time I was really busy at work and had been basically going straight from work (thankfully at home - cheers, Covid) to appointments and then back again. I didn’t really have time to dwell much on the impact of everything which was going on, and to be honest I didn’t really want to. I disliked being pregnant at the best of times and I was just desperate to finish work, for the whole thing to be over, the operation completed and to have brought my baby home. While putting my daughter to bed I did seek out support online for the possible Downs diagnosis, and was reassured by the welcoming and positive community of parents I found. I realised that if our baby did have Downs this was not the end of the world for him, for us or our daughter.
My last day of work arrived and I was touched to receive a virtual good wishes card with some lovely messages from my colleagues (and was also relieved that covid meant I skipped the embarrassing office presentation this time around!). As expected, I hadn’t quite got to the end of the to do list so had a few bits to finish off over the weekend, but the end was in sight. I had finished work at 34 weeks, knowing that I would be sick and tired of it by that point and also that I had felt ready previously to go back to work before my mat leave finished, so didn’t see the point of “saving the time for when the baby is here”. I had a huge list of things to do in my first few weeks of mat leave, both in preparation for his arrival and general accumulated life admin, but first on the list was some rest and relaxation.
The next morning, my husband took our daughter to the shops and to her football class. I sat on the sofa and realised that I couldn’t feel the baby move very much. I tried all the usual tricks - something to drink, moving around etc and reassured myself that usually I was busy working or with my daughter at this time of day and couldn’t tell if it was usual for this to be a quiet time of day. I had been on the go for so long. I was starting to think that maybe I should get checked out but eventually I felt him move and figured that he had just been resting and then switched position.
Over the next couple of days I finished off the remaining work and started to feel more rested again. Some of the discomfort I had been feeling due to the polyhydramnios had also lifted and although the baby seemed to have shifted position again (at our scans he was variously head down, breech and an unstable lie) I could feel him moving enough to reassure me. On Wednesday. I took my daughter to the park and imagined us back there in a few weeks with a little one in tow. The next day was my routine midwife appointment. Due to some mix-ups with clinic times at my GP surgery, this was at the midwife base about 30 minutes away, but I was happy enough to drive over there. After all I was off work with little else to do and I would rather see the same midwife I’d had for all my appointments than someone new which would be potentially closer. After a long lie-in, I got in my car and drove to the town where my appointment was. I remember passing a number of country pubs - closed of course due to covid - and thinking they would be nice places to visit once everything reopened. I found my way to the midwife unit and waited for my appointment, feeling content. As I waited I saw a new mother leave with her newborn and I remember thinking that would be me soon.