Emilia

Shaun's Story

I still remember it clearly, hearing the news that the initial round of tests showed some hormonal discrepancies and we would require further tests. At the time, it didn’t really sink in, it’s the kind of thing that will never happen to you, until it does, and that’s when it hits.

At first I didn’t really understand it, but fortunately Sarah dove in and did enough research for an entire lifetime. When she went through it all with me I thought that it was just a blip, and after the next stage of tests it would all come back fine.

Unfortunately, that wasn’t the case.

The call we received was heartbreaking, our baby was ‘incompatible with life’ and would most likely not make it to birth. It all sunk in then, and it didn’t matter how much I told myself that this was wrong, that it couldn’t be happening, the stats were against us.

They’d run the tests twice, this test that had a less than 1% chance of error, so it wasn’t looking good. It was game over and we had to accept that fact. We could have further tests, but why? That’s how it came across on the calls, so we began to prepare for the worst.

After looking into options to terminate our baby, I felt everything fall apart for me. I couldn’t let that happen, not when I needed to be strong for my family, so I put on a brave face and tried to just get through it, living each day like it was a new nightmare.

When Sarah spoke to me about a case in Australia where a couple had been in the same situation as us, but things turned out fine, I didn’t really believe it. She was clutching at straws, the science told us that, but if it helped her through it then I was willing to go along and get some further tests. 

We sat there in the hospital, and things started out grim. The consultant was very to the point, and clearly an expert in her field, and started off by saying that “we are here today just to help you feel better that you’re making the right decision.” In her mind there was no chance things would go well, she knew it, the science told her that, the stats told her that, so why would she approach it any differently? 

Attempting to complete the amniocentesis was impossible and we would have to wait a few weeks to try again, and seeing how torn we were, the consultant checked with the lab to see if the long term cultures had come back. They weren’t due for days, and it was far too early, but she would check just to help us feel a little better.

The first stroke of good fortune came back. Someone in the lab was feeling pretty generous that day, and although the cultures weren’t complete yet, they let the consultant know that this was looking like confined mosaicism at this stage.

This was honestly the first time where I thought things might actually be OK in the end. It was the look in the consultants face, the change of her demeanor. Suddenly she looked lost and a little defeated, like the impossible could happen. All those journals and all the science didn’t make sense, and she turned to us and said we needed to book back in and “at this stage we would strongly suggest waiting to find out and not proceed with a termination.”

That was the first time that a conversation hadn’t been all about terminating, or losing our baby. It was the first time we had a glimmer of hope in this tumultuous ocean of bizarre facts and science.

Of course we waited, and the next few months were all over the place. The scans looked great, and things were progressing, but in this time we were told that tests looked good, but then tests looked bad, then maybe the baby has a hole in her heart, followed by there is no hole in her heart. The ups and downs were like nothing I’d ever experienced before, and by the time it was all done I was a mess.

After months of uncertainty my mind was more than a little broken, but it was a case of holding it all together. I’m not normally an emotional person, but I broke down a lot over this, over the idea that no-one seemed to know what was happening with our baby girl. I can still remember vividly just sitting down in the corner of the kitchen and crying, having no idea what would happen or how I could fix things for my family.

We were all in this together, the consultant, the health workers, all experiencing this weird situation, and none of us knew what would happen in the end.

Right up until Emilia’s birth we had professionals unsure. During labor we were asked “what do we need to do with the placenta?” as people didn’t know if it needed to go some place to be tested.

The midwife talked about a team on standby, and I had no idea who she was referring to as we didn’t have that for our little boy, but when I looked up there were two professionals standing there with a machine on wheels that looked like it was about to do battle with Optimus Prime. They expected our baby to die, even at that last minute.

That uncertainty is horrific, and looking back I just wish it was handled differently. Those tests, those first tests that flag a warning, if only it were a simple flag that meant further visual tests would be needed, and perhaps education for the parents to be. An awareness piece rather than a nightmare brought to life.

The way it was all presented to us was a case of the facts don’t lie, this is it, the end, so brace yourself, but that simply isn’t the case. The professionals were all incredible, and as we persevered and went through this, they all seemed as surprised and amazed as we were, shocked that any of this could be happening.

Even now, we don’t want further tests due to the uncertainty from professionals. Our baby girl is perfect, at least we think so, and we know from how this has all been handled that the knowledge just isn’t there. It wouldn’t benefit us to know, but we do believe it would put Emilia at a disadvantage, with health care professionals most likely assuming any future health issues were related to this.

Honestly, it’s a horrible thing to go through, but if there’s a glimmer of hope in all of this, it’s that these tests aren’t as accurate as they are portrayed to be. There are layers, and there are other considerations to take into account.

We threw the dice and went through hell, but we came out with a miracle. All I can say is that when it feels like it’s all just falling apart, follow your gut and look at the wider picture. There is so much material out there, so much research that hasn’t helped to form how our health service deals with this issue, and that needs to be remembered.

It worked out for us, but my heart breaks for all of those who have lost their own little miracles because the ‘science and stats’ said it was the right thing…