Parents’ experiences of neonatal surgery

Messages to others

Many of the parents we interviewed talked about how valuable and reassuring it was to hear the personal stores of other parents. We asked parents if they had any messages for other parents or words of advice.

The clearest message was to find other parents to talk to, either face to face, or more likely through online forums and support groups. Clare’s son has exomphalos. She advised, 

“Find other parents. My absolute number one thing. Read lots of information. But it’s easy to read the doom and gloom stuff….. and that was why I felt really motivated to participate in this study is to kind of share real life experiences because, as I said, you can kind of get the medical side of things. But, actually, the, what it’s like as a, a parent, is really important to find other people who understand.”
Parents also recommended asking questions and educating yourself as much as you can, from reliable sources, that will be the doctors, nurses and surgeons looking after your baby, but also online sources and support groups. And trust in your instincts as you know your baby better than anyone else.
Several parents stressed that, no matter how much you might want to be by your baby’s side all the time, it is important to look after yourself and take breaks.
And finally parents were very clear about one thing. It does get easier. Alison’s son had exomphalos as a baby. He had a normal childhood, playing, climbing, throwing, football, sport. He is now healthy, bright man in his 20s. “It’s not an easy road…….but just stick with it, it’s worth it in the end.” Others said, stay calm, just deal with every hour as it comes, and it won’t last forever.

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