Saturday 30 June 2012

Explaining Premature Birth to Your Child

I've often wondered how best to approach discussing premature birth with Joseph. I know older children and adults who were premature who weren't told until they we were older, and were shocked and upset. I wanted Joseph to know his start, so that by the time he gets to school, should he need to take photographs in, or it comes up, that he's confident explaining why his start was a little bit different to the majority of his school friends.

I haven't been able to find any books about prematurity written for children so, have just made it up as I've gone along. I am not really a photographer. We have no pictures up in our house, and whilst I take the odd holiday snap, I've never really documeted my life with pictures. When Joseph was born I felt a compulsion to take pictures often. I never went in to the unit without my camera. I felt this need to chart his journey and I am so pleased I did.

I decided to start with this picture:

I thought this was a good start, as he can see that we are with him, and it gives him a point of reference. He is only a few days old here, and looks small, but not poorly. He doesn't have breathing equipment on, although you can see what he calls his "spider legs", the little leads for his monitor.

I have showed Joseph this picture of him, as I think its quite cute, although there is a lot of equipment. He understands already about CPAP that helped him breathe. In his arm is the long line, but I haven't explained that. He also knows about the pads on his chest, as they told the doctors when he needed a little bit of extra help.

I love this photo and have used this one to explain about him being fed through his nose, until he was ready to use a bottle. When I was telling him about my friend's new baby born this week at 25 weeks he said to me "will she have a tube like I did mummy, will she have a special box to sleep in?"

I'm so proud that Joseph understands the basics of his start, and we can add more detail as he gets older. It helps me to feel less anxious about it as well. A friend of mine explained to me that her daughter needed to take photos into school in her first year, and she have her a choice so she could choose how much information she felt comfortable sharing.

If you have had a premature baby, or a preemie in the family, how have you gone about explaining it?


  1. Gemma is still little but we have a digital picture frame that,amongst others,has pictures of her when she was little.
    When she points at them I will chat to her,'look mummy changing your stoma', 'when you had your feeding tube' etc and often add that she was very tiny when born and ill but what a clever big girl she has become.
    I will keep these photos out so that she is always aware and can tell her a little more as she gets older and asks questions.
    I never used to take photos either but took lots each day in the unit,even on the worst days to document it and always had in the back if my head it could be her last so take as many as possible.
    It is important for them to know as It's what made them the characters they are today!

  2. This was an interesting post as I've never met anyone with a premature baby who has not told them at a young age or any child who was premature who had issues or was upset with it. Seems that you have encountered people opposite to me so well done in bringing this up with your son at an early point.

    My daughter was also prem and she has always known about it and is actually quite proud that she was that little bit different when she was born to all her class friends :) She did find one recently that was more prem than she was as they had a class discussion about it and the two of them had quite a chat afterwards (she is now 13).

    Originally, when she was very young, we told her that she was keen to meet us early so she decided she wasn't going to wait to be born and was coming NOW! :) We also told her how her dad had to race around the house packing things that we needed for hospital as she was such a surprise we had nothing ready. She loves to relay this story to other people when she talks about her birth.

  3. We have a couple of photos up on the mantlepiece - one of the two of us holding her (much like your first one) and one a closeup during the same cuddle - just head and chest, hat, OG tube and chest pads. Skye has recently been fascinated by the photos. Her main comments have been the fact that she appears very red and then we've told her that the tube was like a straw that went into her tummy because she was too little to suck for herself.

    Last week she wanted to see more pictures, so we went through the whole albums on the computer - all photos of her from birth to a few days after she came home. It took about an hour, but she knows she slept in a box to keep her warm, that she needed something on her nose to help her breathe and that she had a tube in her mouth and then her nose to feed her. She also knows she was tiny.

    I don't, however, think she really understands the concept that her friends DIDN'T have the same start in life (just as I don't think she realises that she's the only one of her friends who has to do physio every day...). It will, though, help her to explain her CP as she gets older, if she knows how her life started and I don't plan to keep much from her.

  4. Thank you for commenting, that is really lovely.

    In my case Joseph was born because I was very sick, and I feel a degree of (completely misplaced I know) guilt about that, so I think I was keen to "get it out of the way".

    My doctors all thought I would go to term, but I knew he'd be early so I had my bag packed at 24 weeks, complete with a toy for the incubator and a photo of us to put inside it! By early I was thinking 34 weeks, not 27!

  5. we have a few photo's up around the house and have a digital photo frame that contains pictures from the last 10+ years, including some of Ellen in hospital. She has grown up knowing she was early. Because she wa born 2 weeks before xmas we always say she wanted extra presents that year, something that she loves!
    With Ellen, it was 2 years ago that she really started asking about things and that was because of her voice. Ellen had PDA surgery at 7 weeks and it left her with a paralysed vocal chord which in turn has left her with a wonderfully husky voice. Because she has had SALT she was aware she was different and she asked. Then an advert for Great Ormand Street came on and, as that was where she had the operation, it just came out as we were talking about it.
    Now she happily tells people that she 'came out of mummy's tummy too early and needed an operation the Dr's made a small mistake and left her voice sounding like his. Its ok though cos they saved my life.'
    Recently Ellen has become aware that not all the tiny babies are as lucky as she was and she has started talking about wanting to do something to raise money for them :)
    I had an incredibly proud mummy moment when she said that!

  6. I now have the problem with Joseph that he thinks all babies are poorly and come in boxes! He has no idea that his start was different, and I haven't put it to him that he is "special" or that it was different to other babies yet. I think honesty is the best policy and with Skye the only policy as she is so bright she would just figure it out herself anyway!

  7. I'd keep it very simple and use props to tell him about it.

    Katherine started asking questions about how she came to be born and I found it much easier to take that up and run with it.

    I have a large cardboard box upstairs filled with everything from NICU; care pots, eye masks, b/p cuffs, hats etc. She is fascinated by these and loves to hear the what they were used for.

    Like the others who have commented, we have photos of her through different stages of her 'smallness' around the house. She now identifies it to be her and asks about them.

    When she was in hospital last year, there was an empty incubator at the bottom of the ward and it gave us a good opportunity to talk about what it was and how long she was in hers.

    You might find it easier when he's a bit older, when his own sense of curiousity develops rather than telling him now and running the risk of overwhelming him. He'll be more interested if he's the one asking the questions!

    Btw, just did a quick search for books for children about prem babies and came up with this link with some on it. Maybe you've just found a niche market :-)

  8. Ours will know early on as well. They were supposed to valentine babies and instead arrived on thanksgiving day at 28 weeks. I call them my turkeys. They are only 7 months now so they are no where close to being away but I have literally taken thousands of pics and have a NICU scrap book. We are good friends with many of the nurses as well. We talk about them coming early and make jokes about many of the events as well. Every time my drama queen gets hurt and pitches a fit I tell her, that's nothing, you had a spinal tap at 3 weeks! I plan for them to just grow up w knowing part of their everyday lives. I want them to know what miracle babies they are!

  9. When my now-19-year-old preemie was little I told it to her as a bedtime story. My parents sometimes told me the story of the night I was born as a bedtime story, so that tradition had already been established. I put it all on age appropriate terms, of course; I told her they looked in my tummy with a special camera (ultrasound) and saw that she needed to come out so they told us, "This baby's going to be born tonight." Then they made a special hole in my tummy (c-section) and took her out.because they couldn't wait for her to be born the regular way. She had no curiosity about the "regular way" until she was 4 or 5 and so we addressed that then.

    In retelling it several times we got some patterns down that she learned to anticipate just like any story: "I went through the big doors and looked in that corner and that wasn't you, then in that corner but that wasn't you, then in that corner and that wasn't you, and I looked in that corner and there you were!"

    We told her the story many times and as a result she thought it was special rather than strange. In our experience, the sooner you tell it and the more often you tell it the better.

  10. Fascinating post (as usual-could you please write a bad one one day?!!). Although my scamp is still quite little at nearly-2 it is something I have been thinking about. We've looked through some of her early photos and she signed "baby" back at me. We also have the children's book "Lyra and the Flying Fish" when she is a bit older. I am a bit lots on explaining the complexities, but was thinking using the old "you just couldn't wait to meet me!" x

  11. mummypinkwellies1 July 2012 at 21:42

    Oh wow! I hadn't thought about this at all. I didn't realise they did anything about their birth at school!

    We have no preemie photos up at home. In fact we have very few of Lexie up, very few photos at all in fact. That's something I should definitely think about...

    I too have Lyra and the flying fish to read to her as a bedtime story and I've thought about writing Lexie a story of her own about her birth, definitely think I should now.

    Thanks for this post, as always.


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