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’).
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.

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