Parents’ experiences of neonatal surgery
Pregnancy after finding out something is wrong with the baby
Having a baby diagnosed with a condition that would need surgery had a major impact on the rest of pregnancy. Women we spoke to felt as though they were on a different pathway - it was like being “bumped off the normal course of pregnancy” (Claire)
There were parents who did try and enjoy their pregnancy and tried to make it as normal as possible.
“I felt, I felt okay, at times obviously it crosses your mind and you worry and you think oh this is a big thing going on here we’re gonna have a poorly baby when he’s born. But again I still enjoyed being pregnant it didn’t take over which, which is surprising actually when I look back but basically I just focused on all I can do is look after myself and grow him and it’s, I’ve done my bit basically, that’s all I can do” Ally
When Amy’s friends held a baby shower for her, she said “it was the first and maybe the only time that it felt like a normal pregnancy”. She also made a point of asking for scan pictures and keeping them in an album, and asking staff not to tell her the sex of the baby so it would be a surprise. Fiona and Mike, on the other hand, wanted to know the sex so they could look forward to having a little girl.
Hayley said, “I actually enjoyed being pregnant…it was quite an easy pregnancy, apart from all the scans.” But many women said that they did not really enjoy the rest of their pregnancy. There were frequent visits to the hospital for scans of their baby, and they were closely monitored. They felt anxious about the baby inside them, and about the surgery he or she would need after birth. Some found it very hard carrying a baby they didn’t know would survive. Alison said she worried the whole time. “You just don’t really know what the outcomes going to be. You hope for the best and you hope that the operation’s going to be fine….it was a very worrying time for us.” Amy felt that her pregnancy became very medicalised, and as if her own needs as an expectant mother became “lost”. Gathering as much information as possible was important to parents during their pregnancy. Amy needed to have as much information about her daughter’s exomphalos* as she could find, as it helped her cope. Parents could find dealing with other people’s reactions hard during their pregnancy. Often family and friends didn’t know what to say and were unsure how to respond. Jane and her husband decided that writing a blog during their pregnancy was a way of updating people, helping them feel involved, without having to talk about it all the time (see ‘Communicating with friends and family when a baby needs neonatal surgery’).
Yes. I think people really didn’t know what to say because people always say, when you’re pregnant, you know, “As long as the baby is healthy.”
And then, when the baby is not healthy or not in a conventional way, people are a bit unsure as to what to say or how to respond. And I, I think people cope with it in different ways. I didn’t have a problem with telling people about it. In fact, I probably talked about nothing else for a long time. But it just meant that I found it very hard to be around other people who were pregnant at the same time or to talk to them. Because they were nesting and buying things and, you know, going out for lunch and on maternity leave and I was in the hospital. So that was, that was very hard and I think some of the support groups that I found online were extremely helpful in that time because I think it can be very isolating, definitely.
No, didn’t enjoy it like. I think I’m normally the type of person who will block out my feelings for stuff like I won’t really deal with it it’s like I’m in a haze sort of thing. I didn’t enjoy my pregnancy one little bit and I don’t know if that was because of me if I was maternal shall we say or but it was, it was obviously the circumstances. When people came over and wanted to touch my belly I was like get off like, didn’t like that I didn’t like, I didn’t, I wasn’t excited like I didn’t even do [son]’s nursery cos I wasn’t that excited to bring him home cos I knew he hasn’t gonna come home for a while. [Partner]’s mum did the his nursery for me. I didn’t yeah just sort of like everyone talking about baby’s and stuff like that I would be like trying to change the subject like, everyone like, you know, giving me the sympathy or oh it will be alright yeah you’ll be fine sort of thing and I’d just brush it off, didn’t really deal with any emotions really I felt like a robot I felt like the robot throughout my whole pregnancy and throughout the whole hospital.
And I think my partner actually was a lot different. For him, he, I don’t know if he didn’t want to know or for him that was his way of coping, I’m not sure but, for me, I felt like I needed to be saturated with information and to expect anything. And I think that’s how I went into it when she was being born that she may not live and it was really hard. It was really hard when you were carrying a child that you didn’t know if they were going to live or die and it was hard to tell people, any people actually, you know, family. But more so people that you didn’t know as well because you felt like you were burdening them, in a way, with sadness. And I wanted it to be joyful. This was my first pregnancy and it was, it was tricky. Somebody held a baby shower for me and it was the first and maybe the only time that it felt like a normal pregnancy. It was a really special to me, that time, because it was the first time that I felt really normal and it was really, really special to me.
A lot of people knew purely and simply because [son] was not the only one the estate to have been born with an exomphalos*. I know two or, a fair few that have got exomphalos on the estate, unfortunately I wasn’t in contact with none of them even to this point now, you know, I’m not, you know, I’m not in contact with them. But, you know, people would say ‘Oh, you know, how’s things going?’ but they’d ask me because obviously they know and with it being quite a tight knit community as well word spreads fast. So, you know, it was, but it as more people give you the sympathy vote and I wasn’t after sympathy I wanted, I needed strength, you know, not people saying oh I’m really sorry, you know, I’ve heard, I’ve heard about, you know, the baby’s this that and the other and I’m like I don’t want your sorry's, you know, I don’t want that I want you to just treat me as you would do any other normal pregnant person because, you know, even then it was we’re gonna get through this we’re goanna do this. But then when you’ve got people saying things like that to you it’s like, you know, it’s how to react and you don’t always want to turn around and say ’I’m feeling really crap today, you know, I don’t want to talk about this,’ you know so there’s that side of it, so it had its positives, you know, positives but it also had its negatives.
* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.
Support from family and their partners was very important in helping the women we spoke to get through their pregnancy. Sally-Anne drew strength from her partner and mum, although still felt she there were not enough support networks in the hospital for her. Although some relatives themselves found it hard and weren’t able to offer so much support. Louise said of her mum, “she worries about everything and she, she really had a hard time dealing with it.” It was also hard for parents to manage the expectations of family, particularly when there were older siblings, excited about the new arrival. Mothers often found the anticipation and worry about their unborn child and what lay ahead very hard. They talked about never feeling able to relax, finding it “traumatic”, and “horrific”. Barbara said, “I was a wreck” and Louise felt “exhausted”. Ally was terribly worried through the rest of her pregnancy, but tried to focus on looking after herself as well as she could, as the best thing she could do for her son. Some women felt they were suppressing their feelings. Amy discovered that she needed counselling, others talked about how they just tried to battle through. Shanise said she “just put her feelings on hold”.
Anna said she didn’t really feel she coped very well, but had to keep going.
*Footnote definition:
Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.
There were parents who did try and enjoy their pregnancy and tried to make it as normal as possible.
“I felt, I felt okay, at times obviously it crosses your mind and you worry and you think oh this is a big thing going on here we’re gonna have a poorly baby when he’s born. But again I still enjoyed being pregnant it didn’t take over which, which is surprising actually when I look back but basically I just focused on all I can do is look after myself and grow him and it’s, I’ve done my bit basically, that’s all I can do” Ally
When Amy’s friends held a baby shower for her, she said “it was the first and maybe the only time that it felt like a normal pregnancy”. She also made a point of asking for scan pictures and keeping them in an album, and asking staff not to tell her the sex of the baby so it would be a surprise. Fiona and Mike, on the other hand, wanted to know the sex so they could look forward to having a little girl.
Hayley said, “I actually enjoyed being pregnant…it was quite an easy pregnancy, apart from all the scans.” But many women said that they did not really enjoy the rest of their pregnancy. There were frequent visits to the hospital for scans of their baby, and they were closely monitored. They felt anxious about the baby inside them, and about the surgery he or she would need after birth. Some found it very hard carrying a baby they didn’t know would survive. Alison said she worried the whole time. “You just don’t really know what the outcomes going to be. You hope for the best and you hope that the operation’s going to be fine….it was a very worrying time for us.” Amy felt that her pregnancy became very medicalised, and as if her own needs as an expectant mother became “lost”. Gathering as much information as possible was important to parents during their pregnancy. Amy needed to have as much information about her daughter’s exomphalos* as she could find, as it helped her cope. Parents could find dealing with other people’s reactions hard during their pregnancy. Often family and friends didn’t know what to say and were unsure how to respond. Jane and her husband decided that writing a blog during their pregnancy was a way of updating people, helping them feel involved, without having to talk about it all the time (see ‘Communicating with friends and family when a baby needs neonatal surgery’).
Claire said she wanted to talk about it a lot, but found it hard to be around other pregnant women.
Claire said she wanted to talk about it a lot, but found it hard to be around other pregnant women.
And then, when the baby is not healthy or not in a conventional way, people are a bit unsure as to what to say or how to respond. And I, I think people cope with it in different ways. I didn’t have a problem with telling people about it. In fact, I probably talked about nothing else for a long time. But it just meant that I found it very hard to be around other people who were pregnant at the same time or to talk to them. Because they were nesting and buying things and, you know, going out for lunch and on maternity leave and I was in the hospital. So that was, that was very hard and I think some of the support groups that I found online were extremely helpful in that time because I think it can be very isolating, definitely.
Shanise said she couldn’t get excited about buying things for the nursery and hated it if people wanted to touch her bump.
Shanise said she couldn’t get excited about buying things for the nursery and hated it if people wanted to touch her bump.
Amy said that while people ask ‘how’s the baby’, they don’t really know what to say if there is a problem.
Amy said that while people ask ‘how’s the baby’, they don’t really know what to say if there is a problem.
Sally-Anne felt people were offering her sympathy, when she really wanted to be treated like a normal pregnant woman.
Sally-Anne felt people were offering her sympathy, when she really wanted to be treated like a normal pregnant woman.
* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.
Anna said she didn’t really feel she coped very well, but had to keep going.
*Footnote definition:
Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.
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