It is essential that all practitioners performing fetal anomaly ultrasound screening should be trained to communicate abnormal findings to women, as such information is likely to have significant emotional impact. For example, you may be offered further tests that have a risk of miscarriage. All the time, the baby was kicking and I felt like a murderer waiting to strike her victim. The consultant showed us the letter with our result on and, yes, there were the words "Down's syndrome". And nothing prepares you at all. You may like someone to come with you to the scan appointment. The same anticipation. Severe chromosomal conditions such as Edwards' syndrome are now often picked up in the first trimester antenatal screening but itwill usually be more obviousat the 18- 20 week scan, though usually a firm diagnosis will not be made until one or two specialists have weighed up all available evidence about the baby - which usually means that another expert needs to scan the baby again, or until the woman has had an amniocentesis. I was wondering if anyone has been is this situation and can give me a glimmer of hope. Sometimes women were told that the sonographer had found a 'marker' or sign of a chromosomal condition and had to wait for an amniocentesis to confirm the findings. . The pain was bearable but uncomfortable, the hospital rang me a few days later and asked me how I was. It wasn't measuring at all the right measurements for the age - there was a heart defect, the limbs were sort of distorted, the arms were, you know - you could see that the arms were very sort of contracted, the hands were contracted. And at the end of the day however much we talked about it - that it was going to be the two of us to make the decision and me to actually you know, go through it and decide that that was what was going to happen for him - and I just, I didn't want to do it. Yeah, yeah. I was given a leaflet and told to return four days later to see the consultant. I have a terrible hatred of pregnant women and a new respect for infertile couples. Life expectancy of 30 or 40. She advised I be referred to the EPU to be assessed. There was complete silence during the scan. Just that really! And I remember, the first thing I remember when something might be wrong, was I saw, I finally, we finally saw an image of the skull on the screen, and there appeared to be a sort of black hole shape in the middle. And so this one can't tell you anything, it's pictures, you're going, you're going to see your baby, you're going to get pictures. I think I don't everything just seems a real blur because it was, it was such a strange experience. And at that, I let out a scream I think. We've got the same battle scars. The midwife was on the verge of tears and I felt responsible. But here I was, minutes later, lying down, waiting. Sometimes doctors will wait to give the baby more time to develop and carry out repeat scans - this had confused several parents we talked to who had gone for repeat scans not knowing that the baby might have a problem. Some hospitals do offer earlier anomaly scans of the baby, but they will not show as much detail as scans performed between 18 and 20weeks. b>Bad news at 20 week scan. I did think it was a bit strange that she wasn't talking, and then she sort of said, 'Oh, I think there's a problem. And there [sighs] was a very dark patch over one, where the eye socket was, and they didn't know it, in the Edward's babies sometimes the eyes don't develop properly, or it might have been bleeding, they weren't very sure. So had to come back in a week's time for a scan, which again is quite a common thing I found out. I want to be nice again. Specialist scans are performed in specialist fetal units and if clinicians feel that there might be problems scanning will be done up to 32 weeks. 80 percent of my pregnancies have ended in death and I felt like they were telling me those babies didn't matter. My wife turned the screen away from her. She didn't say at the time that it was a major problem or that it was something to watch out for. I hated my body and hated every feeling I was having. Nights were impossible. Desperately trying to hold onto the glimmer of hope we'd been given. My baby might have Down's syndrome. . Tissue paper will be tucked around your clothing to protect it from the ultrasound gel, which will then be put on your tummy. So carried on with the plans, and, you know, planning for the, another baby to come along and then we went for a 20- week scan which is obviously the big one and very exciting, seeing all the arms and legs and once again everything was going fine, 'Look here's the baby, here's the length of baby'. So we gave up and said we'd arrange the funeral ourselves. We had the 20 week scan yesterday and got some devastating news. I took my vitamins, stuck to the healthy diet and put on a brave face. You can change your cookie settings at any time. We had so much power, we could decide that this little thing should die. The doctor wanted to do another blood test to confirm a significant drop in my hormone levels. 17/12/2020 17:13. Except for the persistent, nagging doubts. We've joined the grown-ups and we both feel very different. My mum arrived early to look after our son, and my partner and I got a cab to the hospital. So we decided that, to have the scan and we went along I think early in the week for that, and spent quite a lot of time with the consultant after that. The sonographer then passes a hand-held probe over your skin to examine the babys body. She endured many agonising rounds of scans and tests, and unfortunately met with some unhelpful attitudes from some healthcare professionals. Away you go'. In some cases concerns in utero fix themselves sometimes needs treatment. We, I was with my mum, and they scanned and found choroid plexus cysts on the brain, which is just a mark, it's a marker on the brain, it's a, what they call a 'soft marker'. So he went out for a walk. If this happens, you will be offered one further scan by 23 weeks of pregnancy. The gel makes sure there is good contact between the probe and your skin. Those two weeks were agonising for us both. Instinctively, did it feel right? 'Yes, if that's okay with you,' kind of thing, like you do. I would be put to sleep, and when I woke up I wouldn't be pregnant any more. Sometimes women were told that the sonographer had found a 'marker' or sign of a chromosomal condition and had to wait for an amniocentesis to confirm the findings. You might be offered another test to find out for certain if your baby has one of the conditions. We felt as if we were in limbo. This was on the Friday. My wife had been very, very healthy, more healthy than the first pregnancy, and of course was shattered by the fact that the news, the news was appalling, very serious faces. The clinic advised a follow up scan the week after, to check on progress and to see what to do next. Do you have any thoughts about that? And then, so I went to my next scan, which was the 20-week abnormality scan, and we took our first child with us, I think he was 17 months old at the time. A black and white picture of your baby will then be seen on the ultrasound screen. The nursery I had selected for our two-year-old son; my maternity leave; the bunk beds; the summer holiday suitable for a newborn baby. I can feel my child kick, it responds when he shouts at football - I mean literally, this baby used to dance around whenever he'd like scream at a goal - and there cannot be anything wrong with this child because it's part of us already. As I lay down, and the sonographer started, I could see there was something wrong. I popped out from work, telling my boss I'd be back in half an hour. This publication is licensed under the terms of the Open Government Licence v3.0 except where otherwise stated. I've been incredibly lucky to have such amazing support from Sam, my mum, and close friends and family. So that just left the talipes. Public Health England (PHE) created this information on behalf of the NHS. Within it are a number of recommendations for the communication of findings from ultrasounds. We decided that we wanted medication to help me. . For five months my body had known there was something wrong, yet I had felt fantastic. Baby loss support Sam squeezed my hand and told me it was ok. The same anxious wait for a little, pathetic cry. Next most likely (but actually in the minority) they identify something which whilst not 100% healthy is treatable. . He started to scan me with a cold expression, then told me, 'it didn't look good' and that 'my womb looked raggedy'. And it was Christmas Eve and at the time I didn't think, the sonographer did spend a little bit of time scanning us and queried my dates several times and then explained that she couldn't quite see the baby's heart properly and would we come back in a couple of days? The rarest scenario is that the baby is severely ill and choices will need to be made. I was booked back in to discuss management options, if nothing had happened. And I couldn't escape the feeling that I was being selfish. Can you describe the difference between the scan at this later stage in a pregnancy? But with time although we will never forget, I know we will be ok again. Unfortunately I was not met with a compassionate sonographer. Thinking back, I don't know how we left without him. Yeah - in, stomach, out. Which is what I'd seen. You could see her face, and the major aspect that was, that was the indication of what was wrong was the thickening at the back of the neck in this instance, which, when you're looking at a fetus is, you know, sort of half a centimetre thicker or not is completely immaterial to me, and would look like a completely normal neck, but from the point of view of the consultant was severely abnormal. And then I can't remember an awful lot more about that scan apart from that feeling of searching of how to react in an unknown situation - your brain's kind of trying to work out what to say, what to do, but I had no idea what to say or what to do and I think my first thought was, does that mean our first daughter's okay? BabyCenter. At first the closeness came through a sense of guilt. These opinions do not represent the opinions of Tommys and are not advice from Tommy's. The blood test confirmed it was twins. We talked all night and thanked God for crap television. She wanted to have a look at the skull, which was the main thing, but she couldn't see it from where the baby was. No one else attended and we didn't have a service. If you are offered further tests, you will be given more information about them so that you can decide whether or not you want to have them. I wrote a few things down last night when we were trying to go over things, just to remind myself. It seemed a very arbitrary system, and so you quite often sat outside in the waiting room for a couple of hours before you actually got to see the consultant, which was, seemed you know, I kind of remember thinking before we went in to see him on the particular day when we found out there was a problem, 'Why are we sitting here? Well send you a link to a feedback form. Wed like to set additional cookies to understand how you use GOV.UK, remember your settings and improve government services. All my plans were beginning to fall down. It went from bad, to worse, to worse, to dire, then to better. Never being able to look after himself. And how wrong could they be? The "why me?" We'd sort of put those discussions to the back of our mind, and then all of a sudden there are other abnormalities so yeah it was a bit a bit of a shocker [laughs]. It was, 'Oh we'll come back to that'. I give obsessively to charity, especially those linked to sick children. The sonographer told me to take the notes, and the scan photos with me so they could review them also. We went, I went in to the scanning room and they're quite bland facially anyway, whether everything's fine or not they just look at the screen to start off with and do measurements but I very quickly realised that the woman's demeanour wasn't, even for a bland face, was concerning. I could hardly breathe. Registered office: Nicholas House, 3 Laurence Pountney Hill, London, EC4R 0BB. Cardiac surgery can do some amazing things. As I lay down, and the sonographer started, I could see there was something wrong. My partner was away working and was waiting to hear whether he was having a son or daughter. When I think about how long it took them to deliberate ultimately, maybe not, but it just felt like a bit of a fast food situation, didn't it? And in this instance the scan was very evident that there was something very seriously wrong. The same sense of expectation. Maybe. It was over. We understand the real meaning of "shit happens". To comment on this thread you need to create a Mumsnet account. I hadn't thought about the mechanics of such a late termination, but had assumed it would mean some kind of operation. Mumsnet carries some affiliate marketing links, so if you buy something through our posts, we may get a small share of the sale (more details here), tbh, they never give you good news at scans. In most cases the scan will show that your baby appears to be developing as expected but sometimes a condition is found or suspected. Surely he couldn't have missed anything else that is so serious x. I was another one who did get bad news at the 20 week scan. That's fine. No discussion, no quiet contemplation. But worse was to come. I know it is still early days. Then, three days later, I would go to the labour ward - the ward I had been expecting to visit in two and a half months. The baby was very, very small. It felt as if we'd gone underground, that we were part of the criminal fraternity. I then had to wait in the room along with many other patients for an hour so they could observe me. Many described how sonographers and doctors were very restrained and didn't speak at all until they had analysed all the baby's details. And that was scanning up from the above the head, then you were coming up through the child's head, so you were seeing the chambers in the brain, sort of it was evident in all four chambers of the brain, then suddenly one chamber was empty. I had my little leaflet, printed off leaflet about choroid plexus cysts. And it turned out the baby's heart wasn't forming properly, the chambers weren't forming properly. x. Several parents said they would have preferred being told something, even it was vague. Mumsnet carries some affiliate marketing links, so if you buy something through our posts, we may get a small share of the sale (more details here). But he was wrong. He suggested he perform an amniocentesis immediately, to rule out any chromosomal problems. And she said that, you know, as the, if the baby did develop further there would probably be other problems with internal organs that weren't really that visible at that stage. We were bound to each other because of the blood that was on both our hands. 20 week scans look for 11 different anomalies as a rule, however, indicators (markers) are not terribly reliable and in all the literature I found, the targets set for stonographers look like they only pick up around 50% or less of these variants. Sometimes it is difficult to get good views of a baby. It was a bit worrying but on the plus side I got an extra couple of scans and an extra couple of pictures. At which point they turned round and said, 'Well, there is something very seriously wrong with the baby, we don't know exactly what, but you do need to have a more in-depth scan at your regional hospital to find out the detail'. But they didn't. And also what the prognosis would mean for our two year old: now a very happy child, he would have a completely different childhood with such an ill sibling. And they took me into another room. And it all seemed so near at hand, you know, 31, 30 weeks, you feel like you're nearly, you're on the home stretch. So choroid plexus cysts on their own, no problem, but if there's something else wrong, then that's a problem. And they actually asked my husband to come in before they spoke to me. The Royal College of Obstetricians and Gynaecologists (RCOG) have produced a report on Termination of Pregnancy for Fetal Abnormality in England, Scotland and Wales (May 2010). Sometimes a post mortem was needed to confirm the 20-week diagnosis to see if the baby had inherited a genetic problem (such as Fowler syndrome - see '. So he was about two weeks smaller than what he should have been. With my oldest it turns out she has a minor thing that affects 1 in 1000 of the population and wont harm her at all it's just "there" and with my second the issue turned out to be nothing. I wanted to be a passive patient while the doctor did what he had to do. And thank God I did. It was real. It's part of our family. There, I would give birth. Our week-by-week PREGNANCY emails are a must for parents-to-be. I don't know how we got through the next couple of days. I know it sounds odd that you want to hear that it's wrong, but you, you know it's wrong, and you, you want to be reassured either that it's okay or is there something seriously wrong. He started to scan me with a cold expression, then told me, "it didn't look good" and that "my womb looked raggedy". But I still didn't want to be the one who stopped this baby's chance to live. To comment on this thread you need to create a Mumsnet account. factor is very strong. I had a horrible feeling of relief. Being generous and kind generally happens only when you're happy. So when that happened to us I really didn't worry, I thought, you know, it was literally the baby was in awkward position, they couldn't see the heart and that was why. It will take only 2 minutes to fill in. You've had your, you know, you've had your triple test and everything was fine. Though the 18-20 week scan can detect when certain parts of the baby's body have grown abnormally, it may not be possible for clinicians to identify why it has happened or make a firm diagnosis based on the scan alone. You know there's always that bit on the bottom of the thing, 'These are diagnostics, do not bring other children,' - blah, blah, blah.. it's not, you know, it's not a family outing kind of thing, but it feels like it. And I, my husband and I both ran our own business at the time so we were desperate to get back and do some work, and things were going really well, so.. Some parents wondered if it was possible to have the same scan done at 16 weeks rather than 20 weeks. And they, sort of two of them were looking at the scan machine and then they sort of switched everything off and said, 'Oh, I think we have, might have a problem'. The termination would be averting a tragedy. And so began the most bizarre day of my life. 2022. The baby kicked, blissfully unaware of what I had done. Mm-hm. That was the first time I had heard him cry. This time, they discovered the baby has a two vessel cord (only one vessel from placenta to baby instead of two) and I've been monitored to make sure the baby grows properly and kidneys aren't damaged. Thick milky discharge at 14 weeks.tmi pic attached. Could you tell? He had to come to the decision by himself. But now that's changed. The first midwife seemed to understand what we were trying to say, and said she would ask the doctor to come and talk to us. After the triple test you stop thinking, you stop thinking that anything can go wrong. But the consultant had found more spots on the heart and the measurements were the same. Tommys is a registered charity in England and Wales (1060508) and Scotland (SC039280). The appointment usually takes around 30 minutes. We use some essential cookies to make this website work. I was becoming numb to the whole process. It was just a few little things like the kidneys were hard to find, and the stomach was hard to find, but that might be because it wasn't filled with fluid. The consultant explained that this was just very bad luck and not, as far as they knew, genetic. And having read, since read my information on Edwards' syndrome, a good 85 per cent have problems with the heart. We bought a two tests that evening (quite lucky as I messed the first one up!). The results come in stages. And so, yeah we got to, carried on with the pregnancy, kept seeing the consultant, kept sitting in the waiting room outside, because there was a terribly long waiting time sometimes, depending on what time you had the appointment. Some hospitals do offer earlier anomaly scans of the baby, but they will not show as much detail as scans performed between 18 and 20weeks. Can you remember that minute. I had to wait for a doctor to explain the situation. And she sort of got up and walked out of the room and called someone in. I remember thinking, 'Gosh' I now know it was a girl, I didn't know that then, that, 'She looks just like her brother'. We were told to go to the hospital immediately. It sounds crazy, but I just knew. Entering the labour ward, I waited for someone to say, "Go home, you are 16 weeks too early." Did you, how did that scan make you feel? I swallowed the tablet and we left the building. Read full disclaimer. The same rush of excitement. I was young, I didn't need one. The consultant had said it wouldn't be like a normal delivery. And I'd been on the internet looking up all sorts of things and everything was so negative, it was very depressing, because I thought, 'Well, maybe they've made a mistake, or maybe it's something they can fix, I don't know'. We were denying him his life. I felt empty, scared, guilty and incredibly heartbroken. This one cannot show you anything, that's what's inside your mind. I couldn't work out what was taking so long and put it down to the doctor being young and inexperienced. So, in the end, we said we would arrange our own funeral. We would terminate the pregnancy. So we decided to book an early 10 week private scan. You will then be asked to raise your top to your chest and lower your skirt or trousers to your hips. I agreed to an internal scan as the sonographer said we could get a better picture of what was happening. This image shows a baby's face and hands at 20 weeks, and gives you an idea of what you'll be able to see at this scan. Not marginalised into being a victim. When he came back, he agreed on a termination. And they took us out of the scanning room, into a more quiet room while they typed up the report. At first, I still had to deal with the physical implications of having given birth. So I was, they couldn't actually finish the scan then, the baby was moving around too much, so they couldn't scan the heart and the stomach. . Specialist scans had a powerful effect on some parents because they could see the baby more clearly and in some cases people recognised which parts of the baby's body were not working properly. 12/12/2012 22:41. Finally, Monday came and we went back to the hospital. The pain was excruciating, but nothing compared to how I felt inside. However painful and traumatic the labour was, it was better than what would happen at the end of it. Picture every packed football staduim up and down the country - all healthy pregnancies and births. It is impossible to escape them and each one underlines your loss. I couldn't bring myself to push. No, we really didn't, with hindsight we probably should have, but not at all, it never occurred to us to be worried about it. The scan yet again confirmed things were not good, however the sac had grown. But everything seemed fine and we'd been sitting waiting to see the consultant, and I'd had an examination on the bed. . We had to discuss what we wanted to do with the little body after delivery. Try to relax and take it easy. They sort of drew some diagrams, and they said, 'But we need to refer you to a specialist to confirm the diagnosis'. Slightly marked from our peers. Instead, we were shown to a room slightly away from the rest of the ward and the midwife stayed with us to talk through what was going to happen. It is also sometimes referred to as the mid-pregnancy scan . Parents get a chance to emotionally adapt to news and plan. So I sort of went home quite, fairly kind of happy and I, at, at this point I hadn't any idea things could go wrong anyway. So we decided to book an early 10 week private scan. Specialist scans had a powerful effect on some parents because they could see the baby more clearly and in some cases people recognised which parts of the baby's body were not working properly. I was told that while bad news at the 12 w scan is often of the life or death kind, bad news at the 20 week scan is often of the 'needs an operation in childhood' or 'needs to wear a brace for a year' kind. It felt as if we had gone power crazy. Thanks girls, it's amazing how protected our babies are in there isn't it?! I let out an animal scream and [wife] kind of leapt onto me on the bed. I just feel very unlucky. He then told us what the prognosis would mean for the child. And they took me to another room and they explained that the baby had what they thought was ventriculomegaly or something. I should stop being dramatic and pessimistic. We just couldn't use the words. For instance a couple who knew their baby was 'on the small size' were told he was fine at the 18-20 week scan, but discovered at 32 weeks that he had microcephaly. I felt the dread run through me. I'm trying to understand because I haven't seen a 3-D scan, what it tells the parents? I noticed the box of tissues on the table. There were also two spots on his heart, which were "soft markers" for Down's syndrome. I didn't sleep that night I don't think. As though I went power mad for a week, killing my innocent unborn child, and now I am tainted for ever. This might be uncomfortable. I was disgusted - disgusted that such a tablet existed, let alone that I should have to take it. So obviously quite relaxed. I felt more informed, and I felt that that was what I needed in my head to see you know, that I've got to accept now that this, all these things are real on the screen and this was really my baby that's suffering all these things [sighs], but I was sad as well. Went off for the 20-week scan, which you didn't, you weren't there, were you, for the first scan? It felt like a lifetime to reach our 12-week-scan. We're still not at the end of our journey, but we're much further along. It is extremely rare for these pregnancies to reach term as they typically spontaneously miscarry early in pregnancy. He looked excited. For instance a couple who knew their baby was 'on the small size' were told he was fine at the 18-20 week scan, but discovered at 32 weeks that he had microcephaly. It doesn't remove the guilt, but I don't know what else to do. I was becoming numb to the whole process. And at that point I don't think we, I don't think we realised that there might have to be a decision, because we'd talked about it with, with Down's and the other possible problems, but at this point it was, well okay what can be done to fix the problem - because yes the heart's not developing properly but there must be something we can do. So it was, there was very, very little movement from the baby because I remembered first time round by that stage, you know, that the baby was quite big and it moved around a lot at a later scan.