Prem-born child's point of view

[Berry]

Something I read on another forum got me thinking. I often talk with my friends and family about my dream of going full-term this time, in light of having a prem last time. Just wondering how my 2 year old daughter who was born early (27wks), who is a perceptive little lady and very much in tune with conversations etc, would feel about this? Also, she has developed a great aversion to assessments (MCHN etc) where there is discussion of her early arrival. Should I focus less on her prematurity? I wouldn't change her for the world - she is gorgeous and has an amazing strong spirit, and part of who she is stems from being born early. I wonder if she will grow up feeling proud about it or not.

[Ca Plane Pour Moi]

From what I've read, by the age of 5-7 then any premmie-ness (as in talking about adjusted age et cetera) isn't needed - the child will have caught up in all respects. She is who she is; focus on the positives, like her character, because the negatives (such as slower to crawl/walk/talk) really aren't around too long in the grand scheme of things.

As I say about DS, he wasn't late, we just didn't have our diaries in sync. He arrived on time for him, who cares that the doctors were tapping their watches - or in your DD's case, still organising the music choice for the evening.

[Berry]

Thanks for your reply Ryn I think you have hit the nail on the head - it is me not my little girl trapped in the whole thing of focusing on her prematurity - and is it really doing her any good? Who cares that she arrived prem? Time to move on from it. She is fine; doing everything she should. I am going to practice not bringing the word prem into conversation!
Sometimes the perspective of someone outside the whole situation is the key.
Ok its .... for me now its 4.17am....

[tiggy]

Hey Berry!

I think prem kids are amazing little beings, don't you? Like you said your daughter is perceptive and strong and I think you are right, it does stem from what she went through at birth. Personally, I think you sound as though you already concentrate on the positives of your gorgeous girl. Both from a prem perspective and from the pride you have for your daughter. It's ok, I think to relate to prematurity the way you are - that she had a shakey (sp?) start but she has done AMAZING things since her birth. Look at everything she has overcome! That IS taking the positive out of the prematurity.
I don't think you need to play down her early arrival, I think you should continue celebrating who she is because of it!

[Carrie]

That's a really interesting question Berry. I also talk about how I want to go full term this time, which is only natural!!! My DD is to young though to undertand what I am saying...although maybe I am wrong, she will be two in Aug.
To me, DD's early arrival has made her who she is, a strong, independant and fairly stubborn little girl who is also very intelligent and perceptive - which is probably why she overcame all the obstacles that she was presented with. I really hope that she grows up being proud of being prem - because I am so so proud of her, it still amazes me to think of how strong she had to be at only 3lb1oz, and how amazing she is because of it.

[fionas]

Hi Berry

When I was little, my mum constantly told me that I'd come early, how I'd almost died, how she wasn't allowed to see me for two weeks, how they'd made her decide on a name 'just in case' for the death certificate etc. etc.

I can't say that bothered me because she basically told it in a "you're special" kind of way and said the nurses had told her that despite all the barriers, "she's a little fighter." So for mum and therefore for me, prematurity was a badge of honour.

However, if mum had gone on about how perhaps I was behind in talking (find that hard to believe), walking etc. etc. that would have been a very negative message and one that perhaps could have affected me badly. By the way, I have no idea whatsoever if I was behind at any stage and couldn't care less.

So I think it depends on the messages you're putting out to your daughter.

Just make them both feel special regardless of whether they're premature, full term, vaginal or caesarean. They simply don't care about that stuff but will pick up on whether you care about the circumstances of their birth.

[tiffanny]

Hi Berry

However, if mum had gone on about how perhaps I was behind in talking (find that hard to believe), walking etc. etc. that would have been a very negative message and one that perhaps could have affected me badly. By the way, I have no idea whatsoever if I was behind at any stage and couldn't care less.

I agree Fionas, this is what bothers me with my BIL and sister. Their little boy is now 5 years old and was born @ 30 weeks. This amazing little boy has captured a big chunk of his Aunties heart and it breaks me inside to hear them say that he officially has a language delay- how they can say this is beyond me coz he never shuts up. They focus too much on the fact that he is a prem and are missing out on him being such a bright inquisitive and vibrant young boy.

My DD was born @ 31 weeks and it still annoys the c**p outta me when they ask if she has delays. I ever so politely tell them t hat she is continuing to develop her personality and skills at her own pace like any othe child. I say this to even the doctors becuase to me she is a happy healthy beautiful baby.

Tiffanny

[Melly01]

I agree with fionas.
Growing up, my parents always told me that I was their little survivor (they were told by doctors that I had virtually no chance of survival and if I did survive I would be seriously "disabled"). My mother has never mentioned that I was behind in anything. The only thing she was, I guess, disappointed about was that I was supposed to be her 6lb baby and I was only 2lb. But she says it with a laugh so I feel like she is just happy I did so well.

I must admit I do feel quite proud about it all, which might be weird. I used to be ashamed of all the scars I have from various operations I needed after I was born, but now I just think they are signs to remind me of how special I am LOL

No matter how a baby is born or anything else about them, they should be made to feel special, because they are special.

[Berry]

Thanks for your feedback Fiona and Melinda - it is wonderful to hear that you are proud grown up prems; this is my wish for my daughter Emily too!
She has shown a little uncomfortableness recently when looking through her baby record book and her newborn photos showed her with bandages and medical equipment, but I guess that is just because she has no recollection of that and she asked me why in those photos she was "sore"? I was fascinated with that reaction as her brother, who was two when she was born and is now four, has never reacted at all to the medical stuff or her prematurity - just bursting with excitement over his baby sister. The way they run around playing and laughing together you would never imagine how dangerously early she came into this world and all that she overcame in the early weeks. She has just had a comprehensive 2yo assessment by a paed and psych and her report says they are delighted with her growth and development and everything is normal. That letter came in the mail today and it was a delight to read! I've been bragging about it to anyone who will listen.
Thanks again girls for your beautiful replies

[monnie]

I love the way you talk about your little girl, Berry!

She sounds gorgeous...strong and amazing!

There's something about resilience that is so special...and will no doubt help her incredibly through her life!

And to think...she developed that trait from day 1...a willingness to flourish regardless of the toughness of the battle!

And congratulations about the recent report...sounds like she is doing beautifully!

[moment by moment]

My little girl was born at 27weeks due to pre ecalmpsia and HELLP Syndrome and I think she has embraced being prem. She has gone onto excel and really just blow us away.
I show her pictures and she loves babies. I actually think like me she doesn't see the tubes and wires around the babies she just sees the beautiful babies as she has looked at the pictures since she was little. I tell her when we are looking at the pics where she was. I made a slide show with music behind the pics and she loves it. If she hears the songs she runs straight to the computer and yells Baaabbbbyyyyyy.

I think it really depends how you speak of her journey. For me I say that it was an unexpected early arrival filled with amazing and beautiful people. It changed my whole outlook on life,the area I work in and I have also joined groups to help those who suffer from PE and HELLPS, help to inform others about it and also with those who have premature babies for what ever the reason they were born. (hence why i don't get to post too much) I don't look at it as a horrible experience and so so so many people say those words like traumatic, horrible etc. I just say it was stressful but for me I met a few other families in there and we became friends. We shared our experiences and we became normal and it was just a few issues we needed to deal with. We never called them problems and due to us all sharing similar experiences we just understood each other. I suppose it made it easier when everyone else you talked to was going through the same thing so it didn't seem so horrible and traumatic. I think this was her journey and there is no point wishing i had of gone full term with her cause it was not going to change.
Airlie has done exceptional well and walked at 14months 11months corrected and has just really done so much more then we ever expected.
I kind of see it as my duty to tell people about the experience. I don't want anyone else to loose a baby because of PE/HELLPS or have the mother become so ill. I choose to use my own experience to educate others about premature babies PE, & HELLPS through our own experience.
When ever people ask about Airlie I tell them that she was prem and why as i think its important they understand. I then also tell them that her birth age 18months is when she was born and when she to have her immunizations and her corrected age which is her due date age is what her milestones are measured against. I tell them for the first months of a babies life they are trying to survive and become big enough to live outside the humidicrib and hospitals so they are not exposed to alot of things that full term healthy babies are exposed to. I just explain that they need those weeks they were early (in Airlie's case 12+2) to reach her milestones. Most people get it then and they actually say Thanks for explaining it to them.

Berry your lil girl sounds the same as Airlie. Mason our son was 5 at the time so he asked lots of questions and they are very close too. They are both compassionate kids which I think what we have been through has helped rather then hurt them. Airlie is not scared of anyone will go to any health professional too. I think again it comes down to how you react to things.

sorry that went a bit long but got my interest.

Good Luck with all your precious babies.

Take care

Fiona

[Berry]

Hi Fiona,

The prem journey certainly is one filled with amazing and beautiful people! I think it changed my perspective on life too - not only magnifying the absolute preciousness of my little family and its importance over everything else, but I don't think I could bring myself to get back into my previous social work role. I was initiating a PhD project while preg, but when my baby arrived at 27 weeks it didn't seem important any more but rather self-indulgent and I felt it was more important to be the best parent possible to my children, and to be fully available to them.

Will write a bit more later as I need to go have dinner.....

[Berry]

I agree Fiona that the prem journey, albeit stressful, wasn't a bad experience as such. It brings with it a greater understanding of others among other things. I loved having links with other prem parents as it normalised things too, and I loved seeing the photo collages parents have made and given to the hospital depicting their beautiful prem children from birth to childhood. Like you, I have had an urge to somehow help other prem parents, and in a way have done this a bit by being on a hospital committee where my daughter was born, and I feel really lucky to be part of the process of setting things in place to make it better for other parents of prems encountering the NICU environment in future..

It is wonderful how well Airlie is going, and she is lucky to have you as her mum.

I agree there is no point wishing the prem journey had been different as you can't look back and change it, but of course it is a part of who our wonderful child is and the experience brings many positives to their personality and their family.

Thanks for your reply Fiona

[moment by moment]

Sounds like we are on the same wave length Berry.
Its great to hear that your on the committee and doing more to help others.
Love to chat more.
Thanks for your comment on me being a good Mum. I am sure we all question our selves at one point or another but to hear it from others is really nice.I bet your little girl and boy see what you do and how your trying to support others too and know your a great mum too.

take care

Fiona

[Berry]

Thanks Fiona,

I became a bit of a passive member of the hospital committee recently in that I have stopped going in for meetings but preferring to do things by post or email. A recent scare with my current pregnancy (fetal ventriculomegaly diagnosis at 20 weeks - which turned out to be fine at a later scan) gave me a bit of de ja vu and I had trouble getting into the hospital NICU section. I felt I gave a lot of feedback and advocacy for prem parents' though when I did used to attend the meetings.

Maybe after my next bub is born I could do something more; I heard that in some American hospitals there is a kind of mentor system where you link with and support parents who are new to the prem experience. Not sure that it happens in the same way here though. I know when I was visiting Emily while she was in the NICU I felt a little closed off to others and I guess some parents want to keep to themselves at first (online support is always fantastic though, especially Austprem - gee I don't know where I would have been without them...).

Take care,

[moment by moment]

Good to hear that your taking it a bit easy. Better to be safe and I am sure you made an impact when you were going to meetings as you said.
I may well have seen you post I have posted on austprem and I also have been on their committee and have other ties with them as I donate to them as well.

Good Luck with your lil one on the way

Fiona