High suspicion of Aortic coarctation
After the 20 week scan showed an anomaly with our babies heart we were transferred to fetal medicine at our local hospital. This appointment was the very next day. I was so grateful it happened quickly. I needed to know what was going one before the weekend came. On Friday afternoon my Emmanuel and I went to a different hospital for a scan with a specialist doctor.
This time we were in small room with three professionals. The one scanning, the one who was the consultant and another person who I assume was there to take down the information. The scan was identical as the first but these guys knew what they were looking for. Our little boy hid as he always does when he is being scanned and waved his arms in front of the scanner making everything difficult to see. I was asked to empty my bladder. Jump up and down just as I had been the day before. I was even doing downward dogs in the disabled toilet. He didn’t move. So they just worked with the views they had. After much scanning they confirmed what they thought had been spotted on the first scan. A smaller left side of the heart and a possible VSD (hole in the heart). Unfortunately, because of his bad position it was very hard to be sure but what they had seen was enough for us to have a referral to the specialists. I did not know what to make of the news. Nothing was confirmed just yet, but something wasn’t right. I held on to the hope that perhaps it was his position and they weren’t actually seeing what they thought they could see.
We were referred to the Harris Birthright Centre at the King’s College Hospital. The appointment was Wednesday the following week.
That evening I had to make the heart wrenching video call to my family. They had all gathered at my parents’ house to hear the gender of the baby. Of course we had other news for them as well. So after saying hello to the crowded table of people. We told them it was a boy! They were shocked, we all were thinking girl. My mum picked up that there was something we weren’t saying. I told them all that the scan also showed that the baby probably had something wrong with his heart. I could see my ten year old niece’s face right at the front in the corner of the screen. I kept the smile going and explained that it could just be that he was in a bad position during the scan. I couldn’t let on that I knew deep down they had seen something on those scans twice. I think I had not let it sink in yet. I was still desperately hoping that they were wrong. I also didn’t really know what all of this meant at this stage. What was a VSD? What does it mean to have a smaller left heart. I only had some very basic knowledge of how the heart works based on GCSE science lessons. We just had to wait for now and see what the expert cardiology doctors would tell us.
The following week’s appointment was at 5pm. We left the Harris Birthright Centre at nearly 9pm. The cleaners were already working their magic in the corridors as we were leaving. Again our stubborn little man did not want to pose for the scanners. We walked for miles around the hospital and came back again and again to try to get him to move. I downed a bottle of lemonade and ate chocolate. Nothing. But with a lot of patience they managed to get a clear picture. The doctor and the fellow researcher were amazing. They were reassuring and calm. They spoke to us throughout and explained what they were doing. But they then had to deliver the news of what we did not want to hear.
We sat in a small medical room with the scanning equipment next to us as she explained that our baby has what she thinks is an Aortic coarctation and a possible VSD, though she couldn’t confirm the VSD 100%. Lastly that the left heart ventricle was smaller than the right. She explained that the VSD, the hole, will either close on its own or there may be a need for it to be operated on and closed. This procedure has the potential to be done when Zachary would be older and bigger and therefore may not involve open heart surgery but a process where a super small balloon is fed into Zachary’s heart via one of his big blood vessels (this could be one in his groin, arm or neck). The hole in the heart is not really anything too massive or hard to deal with. The coarctation, the narrowing, is. It means that the artery that comes out of the heart that delivers oxygenated blood to the rest of the body is small. Very small across the ‘arch’. Imagine a twisted straw and how hard it would be to get any liquid through it. She explained that our baby once born would need surgery within a few days of being alive. It was not this that made me upset. I could deal with that. It was what she said next that got me. If the left ventricle does not continue to grow or becomes smaller in comparison to the right side then his likelihood of survival, of having a decent life, was massively diminished. His rate of survival would drop. In other words I might give birth to my baby boy, only to bury him a few days later. I would have known him for nine months and only have hours with him before saying goodbye again. This tore me apart. I cried, hideous tears and the doctor stopped her explanation. My partner held my hand and reassured me. I managed to somehow pull myself together so we could finish. She made a drawing for us that showed how the heart works in most people and how our babies heart looks at the moment. I focused so hard on that drawing. The lines of ink that her pen made across the white paper. I needed to focus on something to keep it together. I could fall apart later. After she finished explaining we asked a few questions about the surgery and how that would work. What would he be like after the surgery? How long would we be in hospital? She gave us some guidelines on how everything would work, but only based on her experience. Because these scans were only giving us an indication. An official diagnosis could not be given until he was born. Then they would really know what they were dealing with. The wording they use is ‘high suspicion.’ There is a high suspicion that he has these things. A high suspicion that he will need surgery. Although this is mostly just for the formality of it. To leave enough room in case of error. This gave me a small amount of hope still that they were wrong. He was just hiding in there. He would turn around at the next scan and everybody would go ‘ooooooooohhhh’ there it is. That’s OK, he is actually fine. I still had hope. And even if he did have what they were saying, then it was just an operation with a really high success rate. greater than 95% successful. So all was going to be just fine. Fine. That was a word I started to use a lot after this day. He will be fine, after the operation. I am fine. Everything is fine. He is fine right its just after he is born……he will be fine.
We sat in a small room with a sofa and a box of tissues on a coffee table as we waited for them to finish writing the reports. The fellow research student came in to ask us if we had any questions and to give us the leaflet on heart conditions. She also asked us if we wanted to continue with the pregnancy. Yes really! That easily.
I looked at Emmanuel and asked him if he thought it was the right thing to do. To have a baby that might struggle, that might be ill. His certainty will always stay with me. He said “we have to give him that chance.” and I whole heartily agreed. It wasn’t up to us to decide. We had already decided to have him when we planned for him. Now we just had to see what he brought us. I did think about it. I thought deeply about changing our circumstances and not bring him into this world at all. To let a doctor suck him away into a tube. The thought floored me. I knew this little wiggly creature inside me already. I knew his name, I knew is energy. Emmanuel was right – all we could do was give him a chance. I can see and fully understand that many people might have made a different choice. I understand it fully. But for us then, we made the right choice. the only choice. It was a brief heart harrowing moment. We had also been asked the question several times. “Do you want to continue the pregnancy?” “Are you happy to have the baby knowing this?” It was asked so often that you start to think? Am I? Can I do this? We knew that whatever out little boy had we would give him a chance at life and hope with everything with have, that he thrives.
We also turned down more intrusive chromosomal abnormality testing, as genetic anomalies and heart conditions sometimes go hand in hand. We knew that it wouldn’t make a difference to what we would choose. So there was no need to go through having a big needle pushed into the placenta to find out something that made no difference to us.
After the scans that focused on the heart the doctors wanted another full anomalies scan that was done with them at the Harris Birthright Centre. So we had another full scan where they measured his leg length, head circumference and so forth. I lay there on yet another bed staring at yet another black and white image of my baby. This one was much clearer. We could see his hands and face. I enjoyed it. I focused on seeing my baby and being excited about all the things that a new baby offers. Who will he look like? Will he have his hands or mine? I left all of the thoughts of his heart in the other scan room. This was just a lovely opportunity to see my son. It should have been impossible to feel like this. Or at least you would think it would difficult, but it wasn’t at all. Yes we were facing having a baby who needed an operation almost as soon as he was born, but we were still going to take home a new baby. And from what the doctors were saying he would be healthy and hopefully happy after the surgery. It was just something we had to get through and get him through right?
On our way home I left a voice note for my family to explain what we now knew. It was so difficult having to explain the medical terms as well as the implications. I held back tears a few times. When it came to explaining that if the left ventricle didn’t grow or wasn’t adequate then we would be facing a truly dreadful situation. I couldn’t hold it in. My voice went and I trembled. Once I finished the voice note I sat staring out of the window. I chatted with Emmanuel about what I had said in the voice note and if I had covered everything. During the car journey it all started to sink in. I tried so hard to focus on the new baby aspect but when I thought about not getting to keep him, my mind just scrambled into mush. I couldn’t keep it together and by the time we reached our house I opened the car door and threw up. The next morning I did exactly the same thing. I woke up and cried so much I made myself sick. I was in shock and so pained that our little baby boy had a broken heart. I had given him a broken heart. It must have been my fault somehow.
We were booked in for a follow up appointment for when I was 23 weeks. This is because they wanted to check the development of the left ventricle and offer us one more option to terminate if needed based on that scan. You can terminate a pregnancy up to 24 weeks if there is a medical reason to do so. We were certain we were having this baby regardless but we went to the second fetal cardiology scan just to check that heart again. This time around he was a little bigger and they could see that the VSD, the hole was unlikely to be there at all. It had either closed on its own in the last three weeks or was never there in the first place. Then they confirmed that the left ventricle was growing at the same rate as the right. It was adequate. Which meant that he would have a normal and happy life after the narrow artery was operated on. His heart would be adequate for him. So we had good news and now a plan. The plan was to refer me to St Thomas’ Hospital in Westminster, central London to have our baby boy. I would be induced at 39 weeks to make sure that he would be born when all the right doctors were around. Then within the first few days they would do an echo cardiogram and finally confirm and diagnose what they think they can see on the ultrasound scans.
The operation would be a re-sectioning or reconstruction. They would cut out the narrow part and re-join the two larger parts together from either side. Or at least at the time that was my understanding of it. It may become narrow again in later life and he may need a stint put in place. But generally it would be one open heart surgery and one possible minor keyhole surgery later on. The operation has a greater than 95% success rate. The surgeons doing it are the UK experts. They do this kind of thing every single day. I felt very reassured by all of this information. We knew what was what now and we knew what to face. I just had to get through the rest of the pregnancy. Somehow.
If you have a similar situation I would love to hear how yours is like mine. Or if you are now facing something like this, please get in touch.