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Antenatal Screening

Feelings about antenatal screening looking back

People who had chosen to continue with a pregnancy after discovering their baby would have a disability or health problem generally felt glad they had found out before birth. 

One parent whose baby was born with congenital heart defects said, in some ways, she would rather not have known at all.  

 

Discovering her baby had a heart condition made the pregnancy traumatic. She would rather not...

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Discovering her baby had a heart condition made the pregnancy traumatic. She would rather not...

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I met some people in the hospital and they says to me they found out after they gave birth. They said, "Oh I wish I had known while I was pregnant". I think I if I had had a choice I would rather have not known, because it was such a traumatic pregnancy which couldn't have been healthy for me or the baby, which is a shame really. Things could have been so different.

But then I suppose the other side of the coin is that they was prepared for her, they was ready when she was born, she didn't risk having a collapse or anything and they looked after her brilliantly, didn't they? You couldn't fault the hospital at all, they was absolutely superb.

Everybody agreed it was shocking news at the time, and affected how they felt about the rest of the pregnancy, but most felt the advantages of finding out outweighed the disadvantages.

At one extreme, people felt antenatal diagnosis had saved their baby's life by alerting them to the need to give birth in a specialist centre with skilled surgeons and intensive care facilities. Alternatively, it gave one couple the chance to allow their baby to die peacefully and with dignity.

 

Finding out their son had Patau's syndrome meant they could ensure he was treated with dignity...

Finding out their son had Patau's syndrome meant they could ensure he was treated with dignity...

Age at interview: 39
Sex: Female
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Father' One of the fortunate things to come out of the pre-screening and the diagnosis is, you know, everybody, they tried to make a birth plan. Hospitals are quite keen that everybody goes in now with a birth plan and we were, we knew we were going to have a very special birth and so we could tailor not only the birth plan, but we could also tailor the aftercare plan as well.  

Because we knew that it was possible we'd only have a few minutes with [son]. It was possible he'd be stillborn. As it turns out we did only have a few minutes. What we really didn't want, if that's all the time that he had, we wanted him to retain some dignity. As it turns out, taking him from us, rushing him away, and putting him onto a ventilator would have made absolutely no difference at all. So during those few minutes that he had--

Mother' He stayed completely with us.

Father' Yeah, he was with us in the room all the time. They just gave him a little whiff of oxygen, a little bit of chest massage, and then it became obvious that, you know, his breathing was just dying away and his heartbeat was just fading away.

Mother' But he did not suffer.

Father' But, and then they passed him back to us, and from then on he was our baby. And he wasn't poked, prodded, there was no invasive testing done on him.

Mother' No.

Father' He, all he ever knew was love and dignity, and that was very important to us.

 

Although it was horrible at the time, having her son's heart condition diagnosed before birth...

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Although it was horrible at the time, having her son's heart condition diagnosed before birth...

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If it is an antenatal diagnosis, what my emotions were at first were I didn't want to know. I didn't want to have been told this piece of information, because that then gave me a decision to make that I didn't want to have to make, but with hindsight that antenatal diagnosis actually saved his life.  

If he hadn't had that diagnosis he would have been born at a different hospital where they didn't have any paediatric support at all. So, you know, it just would have been horrible. And because he was that unstable, in an intensive care environment without any support at all I don't know what would have happened.  

So I think in terms of advice to somebody who's had an antenatal diagnosis, it's absolutely horrible at the time, but it is the best thing to know because then that gives you the time to prepare emotionally, but really importantly it means that the right medical support is on hand for your baby the minute that they're born. And they're monitored from the minute that they're born, which gives them the best possible chance in life.

 

Finding out before birth that her son had a serious heart condition probably saved his life.

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Finding out before birth that her son had a serious heart condition probably saved his life.

Age at interview: 41
Sex: Female
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Are you glad that you had the diagnosis?

Oh goodness, yeah, oh absolutely. For all sorts of other reasons, apart from just my own sort of psychological preparation, knowing meant that it probably saved [son]'s life because the surgery was scheduled for the day after he was born, everything was in place.  

You don't want a child with [son]'s cardiac condition being born in a sort of a local hospital where no-one's expecting it and perhaps don't detect the signs, and it can go a few days unnoticed, and then by the time they get to the surgery they're already in an unstable position and perhaps dying, you know. And you just, they could, you could die very quickly with this condition if it wasn't operated on early. So yeah, definitely.

Even in less immediately life-threatening cases, one mother said it was helpful to have had a diagnosis before birth, as otherwise her daughter's condition might not have been picked up until adulthood. The additional anxiety in pregnancy and childhood was worth it to know her long term future was safer. Some people commented on the value of being able to make practical preparations, such as organising therapy.

 

If her daughter's heart condition had not been found through antenatal screening, it might not...

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If her daughter's heart condition had not been found through antenatal screening, it might not...

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I can see the anxieties that it brings on in your pregnancy and I had a lot of anxiety probably that I wouldn't have otherwise had. But knowing as I do how sometimes cases like hers could be missed otherwise and she wouldn't necessarily have been picked up at the post-natal check because she may not have - in fact she did have a slight murmur, but I wonder how much of that would have been picked up if we weren't really listening for it. That might have been missed. 

And, you know, if so, she might not have, she would have just been labelled small and petite or whatever'.and she may not have ever otherwise been picked up until she had problems from the defect. You know, in adolescence or in her 20s when it would have been too late to do anything. And that just terrifies me, that thought. So I am really, really - I would rather have had a few months of anxiety than the possibility that, you know, her case would have been missed until it was too late.

 

Knowing before birth that their son would have special needs enabled them to make practical...

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Knowing before birth that their son would have special needs enabled them to make practical...

Age at interview: 28
Sex: Female
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Looking back now do you feel glad that you knew?

Mother' Yes.

Father' Definitely.

Mother' We had seven or eight months to prepare - not just ourselves, but our family - to do research, to make sure that we knew that we had to try and get on the physio, the Portage [home-visiting educational service], the speech therapy lists. 

We, I actually went up to go and see the breast feeding counsellor before I had [son] as well, because of him being a heart baby with Down's syndrome as well. I knew that that was going to be quite hard and I knew that I'd probably have to express my milk quite a lot with him being in intensive care, so.

Being able to prepare mentally and emotionally was a very important benefit from antenatal diagnosis, though many commented that nothing can prepare you fully for the reality. One father felt they were lucky to have found out very early, so they had a lot of time to get used to the idea. He felt they would make the same decisions again, although another time he might press for more information during screening.

 

They felt lucky their son's heart condition was detected early, and would make the same screening...

They felt lucky their son's heart condition was detected early, and would make the same screening...

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I mean, you know, if there's one interesting thing that's come out of this you think that the technology that they can pick these things up is just amazing, and I think we feel like very lucky that that's been the case and we've been able, that they've picked it up so early at the sort of, you know, I suppose the tenth week of the pregnancy. 

So, that has helped us. We got used to the idea that there was a problem. And I think you talk about antenatal screening, but a lot of parents don't find things like this out until the baby is born and the baby goes blue or something after birth. So we were very lucky because, in the loosest form of the word, but we were lucky because we knew for a long time. We had a lot of time to get used to it.

You said you're very grateful that you found out, so presumably next time, if there's a next time, would you make all the same screening decisions or is there anything you'd do differently?

I don't think so. I think we're probably now a special case because of what's happened to us before, so we'll come into the next time, having, not having to look so much stuff up. I think, I don't think we'd have changed any of the decisions we made. You know, we came to those decisions with all the facts at our finger tips, and I don't think we made a wrong decision, because we've got a wonderful son now out of it.  

But we, I don't know, I just don't think we would've done. I think that knowledge to be able to make those decisions stood us in good stead and I just don't think we'd do anything differently. Maybe I'd encourage, you know, if there were another, a fetal scan, a cardio scan, that I would, I'd maybe ask them to expand a bit more.  

You know, I wouldn't feel as intimidated maybe as you do when you go up to a big hospital in London about asking questions. So you know, I would certainly go in there with a attitude "I'd like to know this, this and this," and I think doctors respect that honesty.

Some people prefer to have a diagnosis later in pregnancy, so they have less time to spend worrying.

 

She was glad they discovered their son's heart condition late in pregnancy, so they had less time...

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She was glad they discovered their son's heart condition late in pregnancy, so they had less time...

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When he was diagnosed, how many weeks pregnant were you?

About 30, 32 weeks. And for some people finding out that late on would perhaps have been a bad thing, but we actually felt, in one respect, that it was better that it wasn't picked up earlier because we had sort of 6 weeks of worry, as opposed to, you know, the whole pregnancy. 

And once he was diagnosed the cardiologist was very informative about the condition that he had and what both the short term and the long term outlook was. And that, well, the outlook was quite negative really, but I felt that that was good that they gave you an honest view, in that anything sort of after that was a bonus really. 

And I mean, he's done better than we ever could have imagined. And I think that it was good that they were honest, although it's hard to accept at the time. So to give somebody false hope, you know, would have been worse really.

However, one mother whose baby was found at 8 months to have hydrocephalus and a partially developed brain would have liked longer to adjust to what was going to happen. In her case, the baby's problems were discovered by chance at a late scan to check if she was breech.

 

If she had discovered her daughter's condition earlier in pregnancy, she would at least have had...

If she had discovered her daughter's condition earlier in pregnancy, she would at least have had...

Age at interview: 28
Sex: Female
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If you'd found out at the twenty-week scan, what would you have thought then about termination?

I don't really know. I suppose I would have thought long and hard about it, because I'd been through so much with [daughter] when I was pregnant. I was bleeding heavily and I used to have constant pains and different things, but she was still there as such, so that's why I carried on with the pregnancy and I had her. 

I don't know how things would have been if we'd have found out. I suppose in one way I would have carried on having her, but at least it would have given me more time to get used to the idea and been able to prepare myself. Whereas I only had one week to prepare myself, from finding out to having her. And as soon as I had her she was rushed away to Intensive Care on oxygen and different things, and I couldn't see her for another two days after that, but I don't know.

This had undermined the mother's faith in the effectiveness of screening earlier in pregnancy and made her feel there ought to be more opportunities for screening throughout pregnancy. She felt no-one had ever explained why her baby's condition had not been detected earlier. (Brain conditions are difficult to detect at 20-week scans because the brain is not fully formed at this stage).

 

She felt screening was not effective in her case. She would have screening again another time but...

She felt screening was not effective in her case. She would have screening again another time but...

Age at interview: 28
Sex: Female
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How do you feel about screening now, looking back?

I don't trust it at all. Years ago they never used to screen pregnant ladies. I don't trust it at all now. That's like the only thing you've got, trust and safeguard you've got, while you're pregnant. All pregnant mums worry anyway, but that's, that's like the bit of, that's what puts your mind at rest until you've had your baby.  

And I just think that pregnant ladies should be scanned more, they should be scanned more. And, you know, how sometimes they miss things that they're supposed to be looking for, the major things of, like, of a heart or of a brain or something, and they miss it.

That's interesting. So even though you don't trust it, I mean, it kind of gave you false reassurance?

It gave me, yeah. I just, it gave me false reassurance, because I had a very bad, a very bad story to tell, really, due to screening. But I just don't think anyway that pregnant ladies are screened enough. They have about three scans from when they find out that they're pregnant to before they give birth, and a lot can happen in them months - the last time they're scanned and from when they give birth a lot can happen. And I just think that pregnant women should be screened more. If they want to be screened more, I think it should be there for them to be screened more.

Would you yourself have screening again?

I would have screening again, but I'd want screening a lot more, if that's possible. Because I had about ten scans altogether, which is very lucky, but that's -  I've lost hope in it for the moment, screening. I probably have done altogether, but that's the only, that's the only thing you've got, until you give birth. But I would have it.

But with a heavy heart?

But I would, I don't think I'd trust it again. I'd have the screening done, but in the back of my mind it's always going to be there now - 'Is there something wrong?' I'm always going to be worrying until I've actually given birth, until I can see for myself, because until then I just wouldn't trust it. It'd just always be in the back of my mind, 'What if?' all the time. Which that should really be there to stop pregnant women worrying, but it wouldn't stop me worrying, at all.

One mother found after birth that her son's heart condition was worse than expected and he had several other problems not picked up through screening, but she still felt screening was valuable. Most of the parents we talked to had not yet experienced another pregnancy or had decided they did not want another baby now, but this mother was pregnant again when interviewed her.

 

Her son's heart condition turned out to be more serious than expected but she still felt...

Her son's heart condition turned out to be more serious than expected but she still felt...

Age at interview: 37
Sex: Female
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I mean, that's one of the things that happened with my son. They said, oh, he had a pulmonary stenosis and a VSD [ventricular septal defect]. And when they actually, he was born and they did an echo on him once he was born, it was, the VSDs were far more severe than they actually picked up in the scan. 

He had two very large ones that covered pretty much most of his heart. So yeah, I mean, they can't always tell, but then in some cases they, they can tell, and they do, they do get it right. But I don't think in our case, if they'd have told - maybe if they'd have said to us, well, it's far more severe than it actually was - I mean, that's the worry - then we may have made a different decision. That, I mean, obviously I've never thought of that. That is, that is the worry. But I think, I think it is good to be screened and to have the choice, and be able to make the decision.

She, too, had originally thought she would not want another baby. Now that she was pregnant again, she would definitely want to know if this baby had similar problems and was having additional heart scans as well as routine screening. She was not sure if she would make the same decision again, because it has been so difficult to watch her son suffering.

 

In her next pregnancy she had screening again. She would not want to see another baby suffer like...

In her next pregnancy she had screening again. She would not want to see another baby suffer like...

Age at interview: 37
Sex: Female
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I mean we've spoke about it quite a lot since we've had our son - what would we do if we found out we had, we were pregnant again and we had another heart baby. Because of everything our son has been through, would we be able to do it again? So we have spoken about it since then, but we never really did at the time.

And do you think you've come to a conclusion about what you would do another time?

Well, pretty much. We said that if - I mean, I said after my son was born that I'd never had another child anyway. But when I, now that I'm pregnant again and I did, we have said - well, I've said that if it was another heart baby, or had anything wrong, that I would want to terminate, and my husband has basically said he would support me whatever I wanted to do.

And what are the factors affecting your thinking?

Basically because, although my son has been through more than you would wish on anyone, but he's through it, he's out the other side, and we can now see the light at the end of the tunnel. Because he's been through all of that, it is mainly my son. I wouldn't want him - he gets so distressed with going to the hospital for check-up appointments, and he does go regularly. And he absolutely hates it, and I would hate him to feel like that about a brother or a sister that he's - about his brother or sister, to see them go through that. 

Not so much about how me and my husband feel about it, because - I mean, I'm not saying that the last four years haven't been the most torturous of my life, but they've also been the best of my life. So - and it's been hard, but you, you do it. People say, 'Oh, well, how..? God, I don't know how you've coped, you're so strong.' But you do it. I mean, and I'm sure that every single person that I know would, if they were in the same position, would do the same thing. 

But I don't think that I would want my son to go through any sort of - maybe it's selfish. Maybe it is selfish to feel like that, because they are so resilient. But I would hate him to suffer, and I'd hate another child to suffer the way that I feel that he has. 

That was one of the questions we asked ourselves' 'If we knew what we know now, would we have carried on with our son, with our first son?' And although we've said, 'Yes, we would have done', again, we've said we don't know if we could do it again. It's very difficult to look back, and see the problems he's gone through, but also to see the end product and think, for one minute, that you wouldn't have wanted him. That's the hardest thing. Although it's, it's been awful, it's also been wondrous.

Last reviewed July 2017.
Last updated August 2010.

 
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