On 28th June we had an 11am meeting with Fetal Medicine and our Consultant at the Ulster Hospital. It was a beautiful, sunny day and we were secretly delighted to have a reason to not be at work that day! This appointment was to go over the results of our Amniocentesis test (the big needle), so far all we knew was Hallie has a large Cystic Hygroma, Fetal Hydrops and Turner Syndrome (TS). To our Doctor's surprise and our delight, we learned that Hallie has Mosaic Turner Syndrome, which means that not all of her cells are affected. In Hallie's case, 70% of her cells have Turners but 30% are completely normal. This equates to a much milder form of the Syndrome where her symptoms would be very manageable and her chances of having a normal life are favourable. I couldn't believe it, we were told on the phone that her condition pointed to Classic Turner's and her chances of having the Mosaic version were incredibly thin. The first time Hallie has proved Doctor opinion to be wrong.
I hopped up on the table for an ultrasound. It's always a pleasure to see our girl; Michael and I still swell with pride when we see her. It's built into us already. Unfortunately, she's still incredibly Hydropic. The fluid around her organs and below her skin is very obvious and the Hygroma on her neck still looks to be very large. The good news, however, is that her condition hasn't worsened but of course, it hasn't really improved either. The best news though, is that her heart is still beating at a strong and healthy rate and doesn't seem to be showing any signs of struggling as yet. I asked the Doctor if he was surprised that her heart was doing so well considering and he said that he was. Hallie is a little fighter, showing herself to be strong in adversity already. She is measuring as normal too - her little legs are only measuring a few days behind which is normal for TS babies. Their growth is usually stunted, however our Doctor thinks that as Michael and I are very tall that she might inherit our height and that will make up for any height issues that her TS might cause.
The Hydrops/fluid in her body still poses the most danger to her - babies with these symptoms very rarely make it to term. This is something we know and have had to come to terms with, but at the same time Doctor still talks about what would happen if she makes it to term and is born. Miracles do and have happened in these cases so all we can do is hold out hope that Hallie makes it, while still remembering that she is very ill and could succumb to her symptoms at any time. At the moment, I will be having weekly scans to check her heartbeat and her fluid levels. There's nothing else that we can do but wait.
As I've mentioned before, had we been living anywhere but Northern Ireland we would have been offered a termination. It's still illegal here, so we would have to travel to England to have the surgery completed. I have always been very Pro-Choice in these cases and if I'm very honest, had we found out about this at the very start of our pregnancy it's something we might have considered. However, we have bonded with Hallie. I will be 22 weeks pregnant tomorrow and she is a fully formed little human being about the size of a Papaya. I can feel her moving around inside of me and she's very much part of our family already. There is no way we could take her life from her. We have made the firm decision to carry on with our pregnancy and let Hallie's fate be decided by her. If Hallie is meant for this world, she will be. And if not, then we will always know that we gave her the best possible chance at life.
Of course, I am terrified of losing her. I have a very rational mind and I know that sometimes I can come across a little too logical. And that's okay. I know, intellectually that I am facing something pretty damn awful but I'm coping, WE are coping, and if it takes a little while for me to emotionally catch up then that's okay too. Losing Hallie would leave us distraught, but we will have learnt so much from her. We'll always love her and would never forget her, but we won't let it beat us. My Husband is an amazing support - I sometimes forget that this is happening to ME, to my body, because he has me so well supported that I naturally think of it as happening to US. We are a team & I can't thank him enough for everything he does and is doing for me and Hallie. He's going to make an amazing Dad one day.
We made the decision that we wouldn't ever mourn Hallie while she is still here. It would be all too easy to admit defeat and stay at home, hiding from the world, but we refuse to do that. It's going to be incredibly hard for me to continue to get more and more pregnant, I'm already pretty big and sometimes I do shy away from going to the local shops just to avoid being seen but it's part and parcel of our decision. As Hallie grows, I will grow too and I will have to explain to people about her condition, but I already know that I would literally undergo any awkwardness and pain for her. There's no doubt about that. We are enjoying this pregnancy - we take her to the Zoo, to the beach, to play Mini Golf...all the fun things. If this turns out to be the only time we have with Hallie, then we're going to make the most of it. So that's exactly what we did after our last appointment - we spent the day in Bangor loading her up with Slushies and paddling in the sea with her. This is our unique version of parenting already, just in case it's the only chance we get.
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