“There’s something wrong with your baby’s heart”.
I can still hear the sonographer telling us those words – every parent’s worst nightmare – and I’m not sure they’ll ever disappear from my mind.
This blog post is about our pregnancy story. It’s a long one….(the blog post, that is.)
Liam and I had always talked about starting a family and were so excited to become parents. We wanted to have our first child soon after we’d got married in the summer of 2016 and were really lucky to fall pregnant after a couple of months.
Now, as you’ll probably figure out as this blog goes on, I am a worrier. I overthink things and my head is constantly on overdrive, stressing about every little possible scenario. So when we did the all important positive pregnancy test, I said to Liam that I wanted to wait until our 12 week scan before sharing our exciting news with anyone – even our closest family – just to make sure everything was ok.
They say a mother’s instinct is always right, don’t they?! Alongside feeling excited about becoming a mummy for the first time, I had this overwhelming feeling… I was desperately scared that something was wrong. Maybe everyone feels like that when they find out they’re pregnant for the first time? I don’t know. But something in my head kept telling me to not get carried away until we’d got the scan photo and had actually seen our little bubs for real. I had no morning sickness. I felt exactly the same as normal. So what if I’d got it all wrong?!
The scan day finally arrived. I remember laying on the bed in the ultrasound room and all I could think was “please let there be a heartbeat, please let there be a heartbeat”.
“There you go, there’s your little baby doing just fine….and there’s the heartbeat” said the sonographer. I could have kissed him I was so happy. “I’m just going to take some measurements to check everything else is looking okay,” he said.
Liam and I continued to watch our little baby wiggle about on the screen, squeezing each other’s hands and smiling, while the sonographer started to measure the baby’s length and the nuchal translucency (which gives a measurement of fluid within the nape of the neck).
It’s amazing how quickly emotions can change. Within seconds I’d gone from a feeling of indescribable fear, to sheer happiness. 2-3 minutes later, that sheer happiness was shattered and all I felt was utter panic. The sonographer started to tell us that the nuchal translucency reading was high. The normal reading for a 12week foetus is about 2mm. Our baby had a reading of 4.6mm. What does that even mean?! Had he just measured it wrong? Nobody told me that they did this on the first scan, I thought they just looked for the heartbeat and let you get all excited about the tiny bean growing inside you. I was sure he’d just told us that the baby was fine so why did this number matter?
Apparently as the NT reading increases, the chances of a baby having cardiac or chromosome abnormalities increases too. He sat us down in a side room and explained that the number can also be misleading. It doesn’t always mean there’s something wrong, some babies just have a high reading for no reason. He suggested I have blood tests taken – and that they’d combine the blood test results with the NT result. Together, we would have a better indication of any problems.
So, I had the blood tests as recommended and 5 days later received a letter in the post. Those 5 days felt like an eternity. But when the letter finally arrived, it said that the chances of our baby having a chromosome disorder such as Downs, Edwards or Patau Syndrome were low. It said the words “low risk” which was amazing. So obviously this NT number thing was completely irrelevant, right? Our baby was fine and healthy, it must be. We’d been booked in for a 16 week “high risk anomaly” scan as a formality anyway, so we’d have the chance then to rule out anything else.
Friday 3rd March 2017 at 8:30am…we were the first appointment of the day at the hospital and it was time for our second scan. I was 16+3 and I’d got a tiny little bump starting to show. I still felt well in myself – no sickness, no tiredness. But I hadn’t felt the baby move yet so I still didn’t really feel “pregnant”. To be honest, I was so so scared and I daren’t let myself feel happy.
I lay on the bed again and lifted up my top ready for the ultrasound gel. The room was deadly quiet. Liam and I couldn’t say anything, so we just waited while the sonographer started the scan. That’s when we heard the worst news possible. “There’s something wrong with your baby’s heart. I’m not a cardiac specialist so I don’t want to misdiagnose you. But the heart doesn’t look quite right, it hasn’t formed properly. I want you to go to Great Ormond Street Hospital for a more detailed scan.” What do you even say to that? “The heart doesn’t look quite right???”
We were taken into the same side room as last time with a box of tissues. I sat and sobbed. How could I have failed this baby already? How would I be able to be a good mother when I couldn’t even do the whole pregnancy thing properly? Why me? Why the heart of our baby? How had it not developed properly? I’d been so SO good during the pregnancy – and even before we fell pregnant. I stopped drinking any alcohol before we’d even conceived (I don’t really drink much anyway). I’d been so careful about what I’d eaten. I had no coffee. I’d tried to get extra sleep. I’d kept an eye on my Fitbit to make sure I was getting a bit of exercise every day, but nothing too strenuous. I was a healthy weight. All of the rules you’re supposed to follow I did perfectly, and then some. I felt like such a failure. And I felt like it was all my fault that our baby was poorly.
4 days later we were on a train down to London to GOSH for the fetal echocardiogram.
The scan took ages. I was laying on the bed for nearly an hour in all different positions so the team of sonographers (there were 4 of them) could get as many images as possible. Just bear in mind, our baby at this point was the size of a pomegranate. These geniuses were looking at a heart the size of a fingernail! And yet they could still count the number of chambers in the heart and see what valves and arteries there were, and what direction the blood was flowing around the body. The science and medicine of today is beyond incredible and I’ll be forever thankful that we had this available to us.
Yet again, after the scan, we were taken into a side room with the lead sonographer and a cardiac outreach nurse. I’d learnt now that side rooms were obviously the place to go to hear bad news. I felt like I was back at school in a biology lesson as they waved pamphlets and flyers at me with heart diagrams on them; then sitting and watching them draw more diagrams as they explained the formation of our baby’s heart and how every 1 in 100 baby is born with a congenital heart disease (CHD). And that it is not anybody’s fault – it’s just “one of those things”. This statistic astounded me – I had no idea it was this common. I expected the number to be more like 1 in 10,000.
They went on to tell us that our beautiful baby had a condition called Tetralogy of Fallot (TOF) which means there are 4 heart defects. The condition can be treated once the baby is born, and “generally” the operations are successful. However, our baby would need to have open heart surgery. The timing of this operation would depend on the baby’s size and general heart function when born, but it would definitely need to be before the baby’s first birthday for optimum results.
GOSH booked an appointment to see us again for when we were 23 weeks pregnant. The baby (and therefore the heart) would be bigger then so we could put a better plan in place for the baby’s future. In the mean time, they recommended I have an amniocentesis to rule out any other issues…because TOF is often associated with chromosome disorders. However an amniocentesis can increase the risk of miscarriage. So we now had a really tough decision on what to do next.
After a lot of thought, we did go for an amnio. They said it would be painful as they put a super long needle into my tummy, taking out a small amount of amniotic fluid from around the baby. I actually didn’t think it was that painful…I think my body and mind were still desperately numb from everything that had happened over the past few weeks and all of the information I’d taken on board.
Again, we played the waiting game while we waited for the results of the test – this time a phone call…3 days later. The fact that the call came so soon made me realise something else was wrong. They wouldn’t be calling so soon if all was ok. I was told our baby also had a condition called DiGeorge Syndrome. This was most likely the reason that our baby’s heart hadn’t formed properly. Every scan, appointment, letter or phone call seemed to be delivering bad news. I dreaded every single appointment after that initial 12 week scan where I’d learnt the hard way about getting too excited too quickly.
We’d always said that we didn’t want to find out the baby’s gender until they arrived. Even more so after the first 16 weeks – we felt like we knew so much about our baby already and we hadn’t even met him or her yet…so if we didn’t find out the sex, we’d still have a little surprise when the baby was born. So at every scan, the sonographers were really careful about their choice of words so our surprise wasn’t ruined. However when we received the letter with the results of our amniocentesis, a formality after the phone call, what we didn’t realise was that our dreams of having a surprise would be crashed. In black and white, written as the first line of the report were the words “XY chromosome found”. And that was that. We now knew we were having a little boy.
3 weeks passed and it was time for our 20 week scan. Surely this one would be a little bit easier. GOSH were monitoring the heart so these local scans were just checking the baby’s growth and everything else, which thankfully had all been fine. WRONG. On this scan, yet again at about the half way point, the sonographer went super quiet. “I can only see one kidney….but I think it looks healthy”. Now, we all only need one kidney as long as it’s functioning ok…two are overrated…so this on its own shouldn’t really be a big thing. But yet again, it was more bad news for our little man. And more bad news for mummy and daddy to get their heads around.
I left feeling devastated once again.
We had our 23 week scan at GOSH where we learnt more about the heart, and strangely, it was after this appointment that my mindset changed. GOSH were incredibly calm about the heart condition. It was “common”. The operations they do are completed regularly and they had a plan in place for our family. Our baby was growing well, was active and seemed comfortable in mummy’s tummy. There was no reason why there would be any further complications – I’d asked some questions around the plans for the birth and was assured that a natural birth would be best for baby. I wouldn’t need to be induced early, the longer baby stayed the better. I could have the baby locally and he’d just be transferred down to GOSH when he was 3-4 days old. He would then have a mini operation which would stabilise him enough to come home and he would be with us for about 6-8 months, before needing his full TOF repair by open heart surgery.
Maybe it was going to be ok after all? We could do this. Liam and I were strong and we were going to get through this together. So at 24 weeks pregnant, we started to look online at nursery ideas, prams, clothes…we were going to be parents to a little baby boy and it was going to be amazing. I’d started to feel little flutters of movements for the last couple of weeks and my little bump was growing. I started to feel excited about becoming a first time mummy.
4 weeks later we had another growth scan – I was 28+1. Everything looked fine. The single kidney was functioning well and the baby was following the same percentile for growth that he had been from the beginning. I was now officially in the third trimester. 12 weeks to go until we would meet our little boy, and I felt happy and excited for our future together.
These last 28 weeks had been seriously tough. Despite feeling well in myself physically, mentally I was drained and I hadn’t enjoyed the experience so far. I knew that needed to change. I hadn’t bonded with my baby yet. I still blamed myself for every element of bad news. We hadn’t bought our little boy a single thing, because I was terrified that if we went shopping for him, it would jinx things and we’d hear more bad news at our next hospital appointment.
If only I’d have known that we wouldn’t have to wait 12 more weeks to meet our boy. If only someone had told me from the beginning of this pregnancy that there are nearly 60,000 premature births in the U.K. every year. And we were going to be one of those 60,000 in 2017.
This is the last bump photo I took at 24 weeks. I actually only took 4 photos during the whole pregnancy which is a really big regret of mine – I wish I’d taken more. I still go over my short pregnancy and try to think about what I could have done differently that could have stopped Noah arriving at 28+4…just 3 days after that growth scan where “everything looked fine”.
I struggle not to blame myself and to stop looking at my body as a failure. I think it’s important to talk about premature labour and raise awareness of it. I’d heard about people having premature babies – but nothing earlier than 34 weeks and I had absolutely no idea it would happen to me. I’ll be honest – I didn’t think a baby could survive if it was born more than 6 weeks early. I’ll go into my birth story and becoming a NICU mum in future posts…but I want other mums to know that they’re not alone if they’ve just had a premature baby. And deep down, I know now that there is nothing I could have done differently – having a preemie was not my body’s fault. It really is just another “one of those things”.