Thanks so much for your replies. I'm keeping busy and trying not to think too far ahead. Husband has been absolutely wonderful and today I'm feeling calmer and more hopeful. At the moment there's no way of knowing if anything is actually wrong, so we're avoiding speculating and keeping away from pregnancy and medical sites which could contain all sorts of things to worry us. Two days down; hopefully only two to go until we see the specialist.
Update: The specialist at my local hospital is on holiday and no one is covering her, and the alternative hospital has no appointments for two weeks! We've been told we can go to Liverpool. The distance isn't a problem, but I'll be pulling my hair out unless we can be seen on Thursday or Friday.
Update: The specialist at my local hospital is on holiday and no one is covering her, and the alternative hospital has no appointments for two weeks! We've been told we can go to Liverpool. The distance isn't a problem, but I'll be pulling my hair out unless we can be seen on Thursday or Friday.
I'm cant think of another way of putting this so will use an example. I mentioned my niece earlier in the thread and provided information about the congenital heart disease (four heart defects) they found at her 20 week scan. Because the heart disease is commonly linked with chromosomal abnormalities they needed to test for four conditions which are associated with the heart defect. The additional tests took a bit of time to arrange and to allow the results to come back.
My niece decided that if the fetus had just the heart defect she intended to continue with the pregnancy but some of the chromosomal abnormalities came with catastrophic physical and cognitive disabilities and some were life limiting so she decided in advance if the tests came back positive that she would not continue with the pregnancy....a heart wrenching decision.
My point I suppose is that at 20 weeks your tests need to be prioritised so you are able to make decisions if you need to. Hopefully they are erring on the safe side and thankfully for my niece the tests came back negative so it was good news (well as good as it could be). Can you contact your doctor to speed things up a bit....I cant believe they are moving so slowly with your tests. Its not just the anguish and stress it is causing you but it is potentially reducing your options if that was necessary.
I am really sorry if I cause you any upset in posting this...its not my intention.
I'm cant think of another way of putting this so will use an example. I mentioned my niece earlier in the thread and provided information about the congenital heart disease (four heart defects) they found at her 20 week scan. Because the heart disease is commonly linked with chromosomal abnormalities they needed to test for four conditions which are associated with the heart defect. The additional tests took a bit of time to arrange and to allow the results to come back.
My niece decided that if the fetus had just the heart defect she intended to continue with the pregnancy but some of the chromosomal abnormalities came with catastrophic physical and cognitive disabilities and some were life limiting so she decided in advance if the tests came back positive that she would not continue with the pregnancy....a heart wrenching decision.
My point I suppose is that at 20 weeks your tests need to be prioritised so you are able to make decisions if you need to. Hopefully they are erring on the safe side and thankfully for my niece the tests came back negative so it was good news (well as good as it could be). Can you contact your doctor to speed things up a bit....I cant believe they are moving so slowly with your tests. Its not just the anguish and stress it is causing you but it is potentially reducing your options if that was necessary.
I am really sorry if I cause you any upset in posting this...its not my intention.
I've had the same thoughts in my head since they made me aware that there might be a problem.
I had a phone call from the hospital this morning. Now they don't want me to go to Liverpool. For some reason they want me to have a scan at my local hospital where the first one was done... and they offered me an appointment next Tuesday. By that point I will be have been waiting a week and a half (so much for their 'see you within 3 working days' policy!) and will be exactly 22 weeks pregnant. If then I have to go for tests that will be another few working days, and then waiting for the results... you are completely right Taglet, my options will be hugely reduced; as will any time I have to make a decision or, if the worst should happen, to say goodbye to our baby.
I feel as though I'm being treated like an inconvenience. How can the sonographer put the fear of God into me, telling me there's no heart and lower limbs visible, they think I will need testing for cromosomal defects etc, and then expect me to get on with my life and wait a week and a half for further news?
I feel like a fraud, sitting at home rather than going into work... but then the fear hits me and I cry and cry. I've begged the screening midwife to get me an appointment even if it means travelling to Manchester or going early in the morning or anything. Next tuesday is so far away.
I am so sad to read this OP and I am incredibly angry that you are being made to wait.
I would keep on at the MW to get you into any hospital you can physically get to ASAP. Can you speak to someone more senior? Can maybe hubby call if you are feeling too upset to be "demanding but reasonable"
If it is bad news - which it hopefully won't be - then there may be important decisions that need to be made and these take time.
Please keep yourself healthy (eat and drink and rest)
Mum called to see how I was getting on and offered to phone the screening midwife. (She works for the NHS and can do a 'callback' so that she's guarenteed a response to her phone call, which I wasn't getting.)
We have been told there is no way we are getting seen by a consultant before next Tuesday. They are all too busy and no other hospital can see us either.
Mum's only suggestion was that we go for another regular scan, in the hope that we get a better image which may show that everything is all right. I'm waiting to hear back from the screening midwife, but husband said that we'll go private if it's quicker.
Edit: A midwife phoned to apologise - she's having no luck in getting even a regular ultrasound booked. There is nothing we can do but wait.
Mum called to see how I was getting on and offered to phone the screening midwife. (She works for the NHS and can do a 'callback' so that she's guarenteed a response to her phone call, which I wasn't getting.)
We have been told there is no way we are getting seen by a consultant before next Tuesday. They are all too busy and no other hospital can see us either.
Mum's only suggestion was that we go for another regular scan, in the hope that we get a better image which may show that everything is all right. I'm waiting to hear back from the screening midwife, but husband said that we'll go private if it's quicker.
Edit: A midwife phoned to apologise - she's having no luck in getting even a regular ultrasound booked. There is nothing we can do but wait.
Put it this way eluf - if they were that concerned you'd be somehow shoehorned in. The staff seem pretty laid back about it. That's my take on it anyway, I know it's different from me looking at it to you.
Put it this way eluf - if they were that concerned you'd be somehow shoehorned in. The staff seem pretty laid back about it. That's my take on it anyway, I know it's different from me looking at it to you.
They said that it was urgent (they normally screen mothers within 3 working days to see if they need further tests), and the midwife has phoned to speak to me to say that they do want to get me seen as soon as possible - but they just don't have the staff available.
She's trying to shoehorn me in at a community hospital, but doesn't seem to be having much luck. Not so much laid-back as under-staffed. She admitted I've been very unlucky - left waiting over a bank holiday weekend and now needing to see a consultant when all 4 of them are away or busy.
When we went to our first 20 week scan we were immediately referred to fetal medicine - same day different hospital. In my wife's case, she had had a little bit a leakage but it wasn't until the scan that we found out there were only a few very small pockets of fluid left and they were worried about lung development. During the next few weeks and loads of hospital appointments the medical opinion was to expect the worst. Our son was born at 28 weeks and was 3lb 6 which was a good weight with being so early. The lung development worry ended up being ok and he luckily didn't have any other problems. He is coming up 6 now and doing fine.
Whilst we went through a tough period and were faced with some difficult conversations during that period the medical teams were always there to support you and the fetal medicine scanning equipment was superb.
Edit - one thing i missed saying is that our 20 week scan couldn't see anything clearly due to the lack of fluid
The issue with going private is that you may end up is a worse position that you are now? What if sonographer sees something untoward but there is no consultant on hand to explain the prognosis?
Of course it could all swing the other way as well (which is what I am praying for !!) but can you cope with a scan potentially showing something "bad" and no-one on hand to explain? You'd still be left in limbo land.
I'd consider this before you decide to go private?
Thinking of you and hoping everything will work out just fine at your next scan. I know the wait is terrible ( I have been there myself with one of my pregnancies) , time drags and every possible thought goes through your mind.
We will all be thinking of you and have everything crossed for you.
The issue with going private is that you may end up is a worse position that you are now? What if sonographer sees something untoward but there is no consultant on hand to explain the prognosis?
Of course it could all swing the other way as well (which is what I am praying for !!) but can you cope with a scan potentially showing something "bad" and no-one on hand to explain? You'd still be left in limbo land.
I'd consider this before you decide to go private?
I've just had the same conversation with Mum. Even if we did decide to go private, phoned round a few private clinics and the earliest I can be seen is Sunday - even if we travel.
No matter what we do, I'm facing a wait. Limbo land it is then.
Spoke to someone at the hospital, who explained why they wouldn't give me a scan before Tuesday. It's not a case of poor visibility and 'could be something, could be nothing'. The baby's tibia bones are only showing 16 and 15 weeks growth and there is no fibula. The feet look misshapen. There is a 'probability' that there is something wrong, most likely a chromosone disorder. I'll find out more next Tuesday when I go to see the consultant, but it has all been laid bare today: there is something wrong with my baby, and it could be fatal. I can decide whether or not I wish to know the extent of the condition, but the chances of this being a healthy baby are minimal.
This is the worst case scenario. My nightmare is coming true and I feel like screaming.
That's truly awful for you, dreadful news. Life isn't fair, it's horrible for you that this is happening. You'll be shocked I know for sure. It's going to be very difficult for you in the times to come. The only thing I can say, is you will get through it. Us humans find the strength from somewhere to cope with the most horrendous things life throws at us.
Spoke to someone at the hospital, who explained why they wouldn't give me a scan before Tuesday. It's not a case of poor visibility and 'could be something, could be nothing'. The baby's tibia bones are only showing 16 and 15 weeks growth and there is no fibula. The feet look misshapen. There is a 'probability' that there is something wrong, most likely a chromosone disorder. I'll find out more next Tuesday when I go to see the consultant, but it has all been laid bare today: there is something wrong with my baby, and it could be fatal. I can decide whether or not I wish to know the extent of the condition, but the chances of this being a healthy baby are minimal.
This is the worst case scenario. My nightmare is coming true and I feel like screaming.
((((((HUG))))))) I am so sorry to hear your upsetting news / Scream and rant all you want , maybe it will help
Yesterday we went for our 20 week scan. Instead of getting to see our baby, after 40 minutes we were told there were problems getting pictures of the heart and lower limbs and the baby was the same size as it should be at 15 weeks.
Rather than being told to come back for a second scan, we've been referred to a fetal medicine specialist. We have to wait 5 days for a specialist scan and examination, possibly an amnesiosis test for chromosome disorders.
Doctors say a second, clearer scan could reveal everything to be normal. Or it could be very, very bad.
I don't know how I'm going to cope with the waiting. I'm trying not to think about what may come after. I look back at old FB posts announcing we were expecting our first baby and I'm so scared that we might not have a healthy baby, or a baby at all. I hate feeling so helpless.
I don't know what advice I'm looking for, but I can't really face telling anybody over the phone or face to face at the moment.
Oh honey, my heart really goes out to you! I know it's so hard, but try not to worry. Worrying won't solve anything & will only make you feel even more stressed x
It's ridiculous you're having to wait so long with all this fear & uncertainty.
I'll pray for you, your husband & your baby.
The one positive thing I can say is that sometimes scans can just be really unclear, especially if baby is laying in an awkward position. My son's other half had that all the way through her pregnancy. I hope with all my heart that's going to turn out to be the case for you.
I hope you are able to obtain the scan soon & that you all get the news you want xxx
Edited to add that I've just read your last post & I'm so very sorry you're having to go through this
I am so saddened to see your update Eluf. I have no words for you either that will help. I too can only pray that things aren't as bad as have been painted. xx
Spoke to someone at the hospital, who explained why they wouldn't give me a scan before Tuesday. It's not a case of poor visibility and 'could be something, could be nothing'. The baby's tibia bones are only showing 16 and 15 weeks growth and there is no fibula. The feet look misshapen. There is a 'probability' that there is something wrong, most likely a chromosone disorder. I'll find out more next Tuesday when I go to see the consultant, but it has all been laid bare today: there is something wrong with my baby, and it could be fatal. I can decide whether or not I wish to know the extent of the condition, but the chances of this being a healthy baby are minimal.
This is the worst case scenario. My nightmare is coming true and I feel like screaming.
That's terrible news, I was so hoping that it was that they were just being extra cautious and it would end up being nothing. I'm so sorry eluf
Spoke to someone at the hospital, who explained why they wouldn't give me a scan before Tuesday. It's not a case of poor visibility and 'could be something, could be nothing'. The baby's tibia bones are only showing 16 and 15 weeks growth and there is no fibula. The feet look misshapen. There is a 'probability' that there is something wrong, most likely a chromosone disorder. I'll find out more next Tuesday when I go to see the consultant, but it has all been laid bare today: there is something wrong with my baby, and it could be fatal. I can decide whether or not I wish to know the extent of the condition, but the chances of this being a healthy baby are minimal.
This is the worst case scenario. My nightmare is coming true and I feel like screaming.
Sorry to hear this eluf.
You must be feeling horrendous at the moment?
I think you and hubby need a few days to digest this all.
I would say that knowledge is power and at least you have some expectations about what you will be told next week. You know to some degree what you are dealing with and can be semi prepared for the "worse case scenario" - although hopefully it's not as bad as you fear?
I have no medical training, although I do know that at the anomaly scan they look for 5 markers and none of them are what you have mentioned.
I am not an expert and all I know is through my own reading / research.
There are no words so I wont even offer any of the usual platitudes. As I say just keep yourself healthy and get through the next few days hour by hour.
I have to ask though who the Hell at the hospital told you this terrible news over the freaking phone??
Scream, cry and shout all you want, no one will mind at all.
I'm so sorry you got told the "news" on the phone, that's an awful way to be told, and at least should have been in person so you could have some questions answered.
I hope the appointment on Tuesday goes ok, I guess it could be a long day with some more tests etc. Try not to google too much, and give yourselves time, and ask for 2nd, 3rd and 4th opinions if necessary.
Oh god I can't imagine what's going through your head right now. It's natural to worry about the worst case scenario, I would probably be doing the same in your shoes. I guess you just need to try and remember that things could be ok.
Can you maybe go away for a few days until your appointment? I know it'll still be on your mind but it might help time go that bit quicker to get away from reality until it's time for your appointment.
Let us know how you get on, I'll be keeping everything crossed for you and your husband.
Oh Eluf, I can't begin to imagine how you are feeling, and I'm shocked you were given such terrible news over the phone. Cry all you want, and get angry. You've been treated callously by the health professionals. I hope you get some answers soon, and please ask for contact numbers for local neonatal support groups. Get as much help as you can, and lean on people all you want. My heart goes out to you.
Comments
I'm cant think of another way of putting this so will use an example. I mentioned my niece earlier in the thread and provided information about the congenital heart disease (four heart defects) they found at her 20 week scan. Because the heart disease is commonly linked with chromosomal abnormalities they needed to test for four conditions which are associated with the heart defect. The additional tests took a bit of time to arrange and to allow the results to come back.
My niece decided that if the fetus had just the heart defect she intended to continue with the pregnancy but some of the chromosomal abnormalities came with catastrophic physical and cognitive disabilities and some were life limiting so she decided in advance if the tests came back positive that she would not continue with the pregnancy....a heart wrenching decision.
My point I suppose is that at 20 weeks your tests need to be prioritised so you are able to make decisions if you need to. Hopefully they are erring on the safe side and thankfully for my niece the tests came back negative so it was good news (well as good as it could be). Can you contact your doctor to speed things up a bit....I cant believe they are moving so slowly with your tests. Its not just the anguish and stress it is causing you but it is potentially reducing your options if that was necessary.
I am really sorry if I cause you any upset in posting this...its not my intention.
I've had the same thoughts in my head since they made me aware that there might be a problem.
I had a phone call from the hospital this morning. Now they don't want me to go to Liverpool. For some reason they want me to have a scan at my local hospital where the first one was done... and they offered me an appointment next Tuesday. By that point I will be have been waiting a week and a half (so much for their 'see you within 3 working days' policy!) and will be exactly 22 weeks pregnant. If then I have to go for tests that will be another few working days, and then waiting for the results... you are completely right Taglet, my options will be hugely reduced; as will any time I have to make a decision or, if the worst should happen, to say goodbye to our baby.
I feel as though I'm being treated like an inconvenience. How can the sonographer put the fear of God into me, telling me there's no heart and lower limbs visible, they think I will need testing for cromosomal defects etc, and then expect me to get on with my life and wait a week and a half for further news?
I feel like a fraud, sitting at home rather than going into work... but then the fear hits me and I cry and cry. I've begged the screening midwife to get me an appointment even if it means travelling to Manchester or going early in the morning or anything. Next tuesday is so far away.
I would keep on at the MW to get you into any hospital you can physically get to ASAP. Can you speak to someone more senior? Can maybe hubby call if you are feeling too upset to be "demanding but reasonable"
If it is bad news - which it hopefully won't be - then there may be important decisions that need to be made and these take time.
Please keep yourself healthy (eat and drink and rest)
I hope it all works out
X
We have been told there is no way we are getting seen by a consultant before next Tuesday. They are all too busy and no other hospital can see us either.
Mum's only suggestion was that we go for another regular scan, in the hope that we get a better image which may show that everything is all right. I'm waiting to hear back from the screening midwife, but husband said that we'll go private if it's quicker.
Edit: A midwife phoned to apologise - she's having no luck in getting even a regular ultrasound booked. There is nothing we can do but wait.
Put it this way eluf - if they were that concerned you'd be somehow shoehorned in. The staff seem pretty laid back about it. That's my take on it anyway, I know it's different from me looking at it to you.
They said that it was urgent (they normally screen mothers within 3 working days to see if they need further tests), and the midwife has phoned to speak to me to say that they do want to get me seen as soon as possible - but they just don't have the staff available.
She's trying to shoehorn me in at a community hospital, but doesn't seem to be having much luck. Not so much laid-back as under-staffed. She admitted I've been very unlucky - left waiting over a bank holiday weekend and now needing to see a consultant when all 4 of them are away or busy.
Whilst we went through a tough period and were faced with some difficult conversations during that period the medical teams were always there to support you and the fetal medicine scanning equipment was superb.
Edit - one thing i missed saying is that our 20 week scan couldn't see anything clearly due to the lack of fluid
The issue with going private is that you may end up is a worse position that you are now? What if sonographer sees something untoward but there is no consultant on hand to explain the prognosis?
Of course it could all swing the other way as well (which is what I am praying for !!) but can you cope with a scan potentially showing something "bad" and no-one on hand to explain? You'd still be left in limbo land.
I'd consider this before you decide to go private?
This^^^^^ praying for you if that's ok ,
I've just had the same conversation with Mum. Even if we did decide to go private, phoned round a few private clinics and the earliest I can be seen is Sunday - even if we travel.
No matter what we do, I'm facing a wait. Limbo land it is then.
This is the worst case scenario. My nightmare is coming true and I feel like screaming.
I'm so very sorry
Kindest regards
TB
((((((HUG))))))) I am so sorry to hear your upsetting news / Scream and rant all you want , maybe it will help
Oh honey, my heart really goes out to you! I know it's so hard, but try not to worry. Worrying won't solve anything & will only make you feel even more stressed x
It's ridiculous you're having to wait so long with all this fear & uncertainty.
I'll pray for you, your husband & your baby.
The one positive thing I can say is that sometimes scans can just be really unclear, especially if baby is laying in an awkward position. My son's other half had that all the way through her pregnancy. I hope with all my heart that's going to turn out to be the case for you.
I hope you are able to obtain the scan soon & that you all get the news you want xxx
Edited to add that I've just read your last post & I'm so very sorry you're having to go through this
That's terrible news, I was so hoping that it was that they were just being extra cautious and it would end up being nothing. I'm so sorry eluf
Sorry to hear this eluf.
You must be feeling horrendous at the moment?
I think you and hubby need a few days to digest this all.
I would say that knowledge is power and at least you have some expectations about what you will be told next week. You know to some degree what you are dealing with and can be semi prepared for the "worse case scenario" - although hopefully it's not as bad as you fear?
I have no medical training, although I do know that at the anomaly scan they look for 5 markers and none of them are what you have mentioned.
I am not an expert and all I know is through my own reading / research.
There are no words so I wont even offer any of the usual platitudes. As I say just keep yourself healthy and get through the next few days hour by hour.
I have to ask though who the Hell at the hospital told you this terrible news over the freaking phone??
I'm so sorry you got told the "news" on the phone, that's an awful way to be told, and at least should have been in person so you could have some questions answered.
I hope the appointment on Tuesday goes ok, I guess it could be a long day with some more tests etc. Try not to google too much, and give yourselves time, and ask for 2nd, 3rd and 4th opinions if necessary.
Can you maybe go away for a few days until your appointment? I know it'll still be on your mind but it might help time go that bit quicker to get away from reality until it's time for your appointment.
Let us know how you get on, I'll be keeping everything crossed for you and your husband.