I took the first pregnancy test on 22nd February 2018. The line was incredibly faint, but I just knew this was happening again. I tested every day (Thank you Cheapie Tests!) for about 2 weeks. On 22nd February, I had some bleeding and convinced myself that it was all over. A close friend had recently had a Chemical Pregnancy so I assumed that I was suffering the same fate. But the tests continued to get darker and I made the phone call to the Early Pregnancy Unit in Lagan Valley Hospital to arrange my first scan at 6 weeks.
At 6 weeks, there wasn’t much to see of course but the heartbeat was visible. I remember crying when I saw it – not howling dramatically, but a few tears definitely escaped! I proudly sent photographs of my basically invisible little Bean to my Mum and my Sister, bless them for pretending to get excited about a little blob of nothing at that point!
Throughout my whole 1st Trimester I spotted on and off. Each time, I would rush to the EPU for an “anxiety scan” as I’d come to call them. In all, I had about 8 scans before my 12 week booking appointment, each time leaving the hospital flapping a scan photo of my ever-growing little Bean. Surpassing the point at which our last baby passed was hard, the entire first 12 weeks were filled with worry and anxiety and tears and tantrums but I really made the effort to look after myself. I took days off work when I was feeling sick and I rested as often as possible. I felt like the world’s most important incubator, I wasn’t going to risk harming my little one for anything.
Our 12 week booking appointment was magical. Michael got to see the baby for the first time and we all laughed at how much she looked like him. She had that classic Archer profile. We left the appointment on a high and rushed to break the news to Michael’s parents. I had 2 more “anxiety scans” after that due to some more spotting, which eventually tailed off the further I got into the 2nd trimester and my confidence was growing. 12 weeks is the magical point, right? When everything is confirmed as fine at 12 weeks you’re basically home free. This is when couples usually announce their pregnancy and start to get excited. And we were no different.
We booked a gender scan for 18 weeks in a private clinic in our home town. It always (and will always) bothered us that we never knew the gender of our first little one before the miscarriage, so we really wanted to learn more about our second pregnancy. We were excited to start bonding! On 5th July we met our Mum’s and my Sister at the Window to the Womb clinic, a bit of a strange place that I wouldn’t necessarily recommend, and had the scan that marked the beginning of disaster. The sonographer was able to confirm that our baby was a little girl, but also discovered that she had extra fluid on her neck that she wasn’t happy with and referred us to the Ulster Hospital for further investigation. In the end, all 5 of us left the clinic in tears – it was awful. It was only 2 weeks since my last scan and there had been no signs of any extra fluid whatsoever and now we were being told that there was a chance that this would end our baby’s life? It was entirely unexpected. I had, and still have, a hard time wrapping my head around it.
We had to wait for an entire week before we could be seen in the Ulster Hospital. Every night that week Michael and I lay in bed and listened to her heartbeat consistently beating at a healthy 160bpm on our Doppler. We were referred to Fetal Medicine and on 12th June our daughter was diagnosed with a large Cystic Hygroma as well as Hydrops, dangerous levels of fluid surrounding her organs. This means that her tiny heart is under immense pressure and is liable to stop at any time.
The Doctor recommended that I have an Amniocentesis Test, a large needle inserted through my tummy and into my uterus to draw out some of the amniotic fluid surrounding Hallie for testing. Two days later I returned for the test, which was pretty grim in all honestly. I’m not the best person for dealing with needles, having only ever having my very first blood test at the age of 29, but what I believe to be Motherly instinct took over – they could have stuck 1000 needles in me and I wouldn’t have flinched because I was doing it for my baby. Michael held my hand throughout, and I squeezed my eyes shut and thought of Hallie.
A week later we got the results – Hallie has a chromosome disorder called Turner Syndrome. We had never heard of Turner’s until this happened to us, of course by now we had Googled every possible outcome for this and had read a little about it in passing. Turner’s is exclusive to females and is caused by an error in the sex chromosomes at conception and affects about 1 in every 2,000 baby girls. A girl with Turner syndrome only has one normal X sex chromosome, rather than the usual two. This chromosome variation happens randomly when the baby is conceived in the womb. It isn't linked to the mother or father’s health or genetics which was a huge relief for us – we didn’t cause this and there’s nothing we could have done to prevent this happening.
Creating a life is no mean feat. Unfortunately, things like this happen a lot; most chromosome issues cause miscarriages long before any testing can be done to confirm the reason. Our Doctor reassures us that this was a fluke and while he can’t confirm that our miscarriage was caused by a similar issue, he says it’s more than likely just two unrelated cases of horrendous bad luck.
The survival figures of Turner’s Syndrome diagnosed in the womb are pretty low and our Doctor's are not overly optimistic about her chances. These survival numbers are mostly due to most couples choosing/being advised to terminate rather than wait around to see if the baby will pass away on its own or survive to term. Turner Syndrome has varying levels of severity that might not be known until after the baby has been born, so every baby that survives to term will have their own unique symptoms. As we live in Northern Ireland, termination is still illegal here, even in the case of fetal abnormalities like Turner’s. We would have to travel to England, undergo surgery, and never get to see or hold our baby – not really something we want to consider. Our options are limited, but tomorrow we have an appointment to discuss next steps. Hopefully Hallie takes any decisions out of our hands, but for now we want to trust that she knows what she’s doing. She’s a fighter and we believe that she is stubborn (like her Mum!) and incredibly strong willed.
Turner’s in itself can be a very liveable condition – there are many women who have normal lives with just aspects of the syndrome affecting them. They are usually slightly smaller in height, they sometimes have slight differences in their appearance and they will occasionally have issues with their heart and other organs. Women with Turner’s will have reproductive issues and may not be able to have children of their own, however, depending on the case, this can be treated and I’ve been contacted by many Turner’s ladies who have had their own babies following hormone treatment. These, are of course, best case scenarios. But in the end, it is the fluid in Hallie’s body that poses the biggest danger to her. For now all we can do is wait and see what happens.
If she has to go, we will understand. We know that there might be a day in the near future where her little heart will stop and I will have to give birth to her. That day will be the hardest day of our lives but we would endure any heartache and pain if it means that Hallie is at peace and that she had the best chance of survival. We have been enjoying her while she is here – taking her to the Zoo, singing her songs (mostly in the shower, Delicate by Taylor Swift is her Jam) and talking to her all the time. Our baby may thankfully never know pain, or sadness, or fear, but she will know love. Our support network has been amazing – we receive texts every day asking how Hallie is doing, we’ve had flowers sent, desserts baked and care packages given. We love when people call down just to hang out – it means everything that Hallie gets to hear all the voices of our loved ones. She is literally surrounded by love, family and friendship all day every day. She’s a lucky girl, despite being so damn unlucky!
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