Appointment 5th July 2018

Today the weather was a bit overcast for the first time in a couple of weeks & I knew it was a sign of things to come. You know that feeling in your stomach when you know something isn't right? I had that from the second I woke up. Hallie was moving about, kicking me all morning so I knew we were going to see a heartbeat, but I just had a bad feeling about this appointment anyway.

We got to the Ulster for 8.45am & met with Roz, the lovely midwife who had called me to tell me about the Amnio results. Basically, she confirmed that the Hydrops/fluid in Hallie's abdomen has increased in the week since our last scan. Being able to chat with Roz is good, because she is completely honest, if not a little more doom & gloom than other people we have spoken to - but honesty is valuable in times like these, even if it isn't what you want to hear. And today's news really wasn't what we wanted to hear! I think, with every scan, we get obsessed with hoping that the fluid has somehow started to go away. In the week between scans you start to believe that will be the case until you're almost convinced that everything will be okay - and when you get bad news it knocks the wind completely out of your sails.

As it was just Roz this time, we felt like we could have a bit more of an open chat about what the reality of the situation is - and it wasn't nice. I broke my resolve for the first time and sat there sobbing while she explained to me what the process would/will be if/when we discover that Hallie's heart has stopped beating. Of course, I already knew the jist of it but actually having that conversation made it seem even more scary and real than any previous appointments where no details were given. While we've been very careful not to get carried away with any hope that Hallie will survive this, I think there was a small part of us maybe thought that in some way she would and it felt like someone had just come along and shot that little ray of hope right out of the sky. We asked Roz if she had ever seen Hydrops resolve and her answer was a firm "never". She confirmed that Hallie's case is really severe and the likelihood of this having any kind of happy ending is incredibly small. Close to no chance at all.

We spoke about the timing of discovering that Hallie was ill and whether or not her symptoms were missed during the early scans at Lagan Valley. We learnt that due to the current Northern Irish abortion laws, our Midwives here are not trained or instructed to look for signs of any chromosomal issues in any of the early scanning procedures (unless they're incredibly obvious), whereas in England nuchal measurements are taken and issues like extra fluid is looked for and determined at the 12 week scan. The reason for this is simple - in England they are allowed to advise terminations in cases of fetal anomalies where in Northern Ireland, they aren't - so there's "no point" in them looking for issues early on because it doesn't make a difference to the outcome, the opinion being that babies with chromosome issues will usually pass away/miscarry before the 20 week scan, the very first point at which NI babies are investigated in depth. This means that post-20 week parents who are told that their baby has a chromosome disorder or disability are given less than 4 weeks to make the decision to terminate and travel to England for the procedure. These parents are having to make this heart-breaking and difficult decision after 20 weeks of bonding with their pregnancy and announcing it to friends and family. This law needs to change.

It's easy to get bogged down with thinking "why us?" and when we're at our worst the overriding feeling is that it's completely unfair that this would happen to a happy couple like us, surely deserving of a family like everyone else? But Roz has told us that issues like Hallie's are incredibly common, more common than you would think and we are not the only couple in Northern Ireland struggling with news like this & making decisions like we are. Its a sobering realisation that you don't always get what you want, when you want it. It's a lesson in patience. We thought we were doing it all the right way - enjoying our twenties like everyone told us to, getting married, buying a beautiful big house & making sure we're financially ready before starting our family. It's a pattern followed by a lot of couples in our social circle and many of us are learning the hard way that things just don't always work out that way just because that's how you planned it. When you make plans, God laughs, right? The feeling of letting everyone down is something I'm struggling with most. Because these things don't just affect Michael and I - we have 4 sets of family that are suffering and the guilt is sometimes more than we can handle.

The wait to see what's going to happen is nothing short of torture for us, and everyone else really. It's hard especially, because Hallie is such a little wriggler - I can feel her dancing around in there most of the day so it's easy to convince yourself that everything's okay in there. It's not until we see her on the screen that we're brought back down to earth with the reality of the situation. Saying that though, our decision to remain focused on enjoying our pregnancy and looking after her while she's here hasn't changed. There are options we have to discuss and decisions we'll have to make on what we want to happen if/when we lose Hallie and we want to make sure we're both on the same page and have some sort of plan of how we want things to go. We're not going to feel brave and positive every single day, and today is just one of the days where we feel down and almost completely hopeless - but still, the two of us have soldiered on and have gone to work and carried on as usual. I'm proud of us for being able to do that. I think the support we are giving each other is carrying us through and keeping us going.

If the worst happens, and yes, it's likely that it will, we are still so proud of our girl. She's been such a little warrior in there and we'll make sure that she's always remembered as a very important part of our family. Because she is. We will learn from her and always hold this entire experience as part of our journey to being parents, which will happen for us. Babies born after tragedy's like this one can only be even more special and loved than normal, right? And to think that one day we'll have little ones that have that much love surrounding them is pretty amazing and we can't wait for that day.