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This day at 8.14am 4 years ago I woke up and my baby didn't move ***Trigger***

(46 Posts)
Sootball Thu 31-Jul-14 10:11:17

And that is the point at which I can say my life changed. At that moment when I woke at 8.14am exactly I knew beyond any shadow of a doubt my baby was in trouble. But I was too scared to call for help - too worried about making a fuss and upsetting the days plans - after all, nothing bad could really have happened could it - every birth group I was in told me babies slowed down as they readied themselves for labour, that the sense of unease was just another sign labour was round the corner.

My MIL who I saw that day was clearly worried but didn't feel able to tell me to get my fucking arse to maternity as quick as I could. I remember the lunch I ate, the afternoon snack, the dinner I munched on as we got in the car after finally ringing our midwife who suggested I go to the delivery suite. Delivery suite monitored me, declined a CS as they were too busy - they broke my waters and left me to it on a bed that was broken in a room with no curtains, just a few hours later my beautiful beautiful girl was delivered and stopped breathing turning grey then simply faded as she lay on me.

I can't tell you the horrors of those first few days - the resus team - the seizures which shook my baby from her head to her toe - the fact she managed to beat the odds and to survive after weeks in neonatal. She is brain damaged - she has learning disabilities, her behaviour is shocking - at 4 she is like a 2 year old, someone called her my forever child and they were right. An investigation showed that my child never stood a chance on that night in that delivery suite - my trace was misread by a junior doctor who had just worked an insane number of hours, at three points in my short labour there could have been intervention, she was struggling so much - but the staff were too busy to notice.

Please, please , please - if you are pregnant and you notice any changes in movement then call your midwife, I was told the WRONG information - I had an anterior placenta, I didn't feel kicks on good days so as a monitoring option that was useless. Trust YOUR instincts - had I called for a more senior doctor or demanded another opinion then who knows - for those who would like to know more look at these links;

Count the kicks - when to call for help

Look at and support proactive changes to maternity services - "In 2012 the number of stillbirths in the West Midlands, Yorkshire and Humber and the North East of England dropped for the first time in 20 years due to the introduction of customised growth charts and growth assessment training by The Perinatal Institute. The Perinatal Institute has estimated that if every trust adopts their Growth Assessment Protocol Programme (GAP), and a similar stillbirth reduction was achieved across the UK, 1000 stillbirths would be prevented every year!"

MAMA Academy - Made to Measure

SANDS funded project into 3rd trimester scans

Inform yourself - trust your instinct

If you or a family member have been affected by a child suffering birth hypoxia (oxygen loss) then find out more at the Hope for HIE Foundation page which has a series of support networks all over the world (set up by friends and well well worth a look).

This shit sucks. This afternoon we'll have a birthday party, I've made the cakes (we take one into NICU) and blown up the balloons, she has a new pink princess dress and a tiara, I'll be reminded by everyone what an incredible child I have, I'll be told by some how strong I am, I'll hug her almost until she bursts, my American cousins will call mid afternoon as they do every year to tell her she is just awesome, at least half my relatives will tell me shes doing just fine and at some point I'll find a dark corner and sob until my heart breaks because - well - this wasn't the way it was meant to be. I know before anyone flames me that it could have been worse - I know

SpringtimeSun Thu 31-Jul-14 10:15:39

I have no words to help you but thank you for sharing your story......so important to remember.
Wishing you a lovely day. (thanks)

Happy Birthday to your gorgeous girl.

Your story brought tears to my eyes, you've written that so movingly.

flowers for you.

charlietangoteakettlebarbeque Thu 31-Jul-14 10:28:57

Its really, really difficult to know what to say to someone in your situation.

I have a friend in work who has a child with a rare genetic disorder. He is 9 years old but cannot walk or talk. I listen to her when she needs an ear, and comfort her when she is feeling low. She also often says that this was not how it was supposed to be. Its plainly obvious that she loves her child and he is her world, but she often becomes upset when other people make (what she sees as) inappropriate comments. I know these people do not mean to offend her, but some people just do not know what to say or how to say it.

I would never say "I'm sorry" or "poor you" or anything like that, because I think if it were me, I wouldn't want people's sympathy. But some people continually say it to her. It seems unfair that this has happened, but at the end of the day its still her lovely child who is always smiling and loving. I just check in on his progress and ask after him a lot. But I also find it really hard to speak about her child in case I say something wrong and upset her.

Its an awful thing that happened, it must have been very traumatic for you at the time. But you have a lovely little child who depends on you and you must be strong for her flowers. Please try. Come on here for support and for a chat when you are feeling low. MN has been a lifeline for me in many different respects, when you have no one in RL to talk to. You may also get speaking with people in your situation.

Can you tell me the best way for me to speak to her about her child?

I can't pretend to understand what you are going through but just wanted to say your honesty is very moving.thanks

mrssmooth Thu 31-Jul-14 10:34:45

I have no idea what you have and are going through. Like another poster has said, your story and honesty is so moving I couldn't read and not post anything. Wishing you and your family a happy day for your little girl's birthday.

Happy Birthday to your LO, I wish I knew what to say beyond that having just shed tears reading your post, but nothing I can think of cuts it thanks

Happy birthday to your DD thanks

What a moving story, thanks for sharing it. Hope you get through today - it sounds like it will be tough for you. thanks

I won't offend you, by pretending to understand, but I want to say thank you for sharing your story.

I wish your DD a happy birthday. thanks

Sootball Thu 31-Jul-14 11:37:40

I'll pass on birthday wishes, she is currently charging around the garden in wellies and a pink dress demanding ice-cream. I guess as its her birthday then she can do and eat what she likes.

charlie every person is different, I have one friend, just one who gets it - sometimes she says she is sorry because she is, sometimes she says she is angry we have to walk this path and sometimes she tells me she is sad because this happened. She is sorry my child cannot tell me the details of our last holiday that we can't have a chat about the ins and outs of finding nemo (her son is the exact same age), she is sorry that my child won't start school in September with her son - after all we had bumps together we thought our children would be friends forever, her son is kind to my child but they are not friends - he treats her as a younger sibling.

Honesty helps. Listening helps too - people asking how I am rather than how my child is can be a good thing on days like today when maybe one person will squeeze my shoulder. Recognising the sadness - validating anger, rage, tears.

Rest assured I am strong for her - I might want to curl up inside but she is happy, fed, loved by many - but you know being strong as such isn't an option - you cope - barely many days - but I cope because not coping is not an option.

roomfullofstars Thu 31-Jul-14 11:42:49

Happy birthday to your DD.

You are amazing.

charlietangoteakettlebarbeque Thu 31-Jul-14 11:51:22

Thank you for sharing, Sootball. My work colleague actually means a lot to me, and she has said that I am one of the only people who she can talk to about it all. I still have moments though where I hold back on what I want to say because I don't want to upset her. So I mostly listen, and try and give practical suggestions where I can. Mostly I try and make her laugh about other things. She just seems so sad it breaks my heart.

I hope you have a lovely day with your daughter - by the sounds of it she is having a ball. Also, you sound like a wonderful mum flowers

allcatsaregrey Thu 31-Jul-14 11:52:07

I have a forever child too. 5 years old and no speech at all. I dont even know if he knows when it's his birthday. It hurts when you see their peers developing and doing so well. I live in a street full of 4 and 5 year olds out playing and interacting with each other and I know my wee lad will probably never be able to leave the garden unsupervised ever. Most people don't understand or care but I just wanted you to know your not alone.

JKSLtd Thu 31-Jul-14 11:53:10

Happy birthday to your dd, wellies and ice cream sounds perfect smile

I know because of my Ds that it's not about being strong, being a 'special parent' or any of those phrases people say. It's your child so you just get on with it. But there's always a little part inside of me that cries when he doesn't do what he should be doing/react how he should/respond to strangers asking him simple questions and so on. But he is developing and is generally the happiest of my children and we now believe he will manage to live independently as an adult which was beyond our wildest dreams before.

Not sure what I'm trying to say but maybe keep on keeping on and enjoy the good moments.

HesterShaw Thu 31-Jul-14 11:57:27

flowers <---- for you x

I don't know what to say. But your post has made me write something. I wish you and your daughter all the best.

StillFrigginRexManningDay Thu 31-Jul-14 11:57:38

Happy Birthday to your DD.

I kind of can understand your feelings. Grief for the life you imagined, the milestones that everyone else celebrates, the wish that she has the same opertunities that your friends ds has. And I can bet that your friend has a sense of misplaced guilt just by her ds being able to do things your dd can't.

My best friends ds has an extremely rare genetic condition, she had him at the same time I had dd3. My heart cries for her sometimes, and sometimes we cry together. She doesn't love him any less but hates the unfairness of it all on him.

DeWee Thu 31-Jul-14 12:05:50

(((hugs))) to you and Happy birthday to your dd.

Please don't blame yourself, going in earlier may well have not changed anything. Someone close to me had a gorgeous baby after a normal pregnancy and abour. He stopped breathing the first day, and, although things initially looked hopeful, he never totally recovered and died in hospital a month later. sad

KEGirlOnFire Thu 31-Jul-14 12:10:51

Sootball and the other PPs who are in a similar situation, I am in awe of you all. Of your honesty, of your ability to cope against all odds, of your understanding that the rest of us may not know what to say and still you don't judge us for that, but mostly because your children are so very lucky to have you as parents.

I have no idea what you are going through so I won't insult you by pretending I understand, but hopefully my tears and the tears of others who have read your OP will show you that someone has listened.

Happy Birthday to your wonderful little girl.

thanks

hiccupgirl Thu 31-Jul-14 12:14:18

Happy Birthday to your DD. I hope she enjoys her birthday.

I won't pretend to know how you feel about everything you have gone through and will go through in the future. I used to work with a lovely young lady who's mum had gone through very similar and also lived with 'what if the hospital had acted sooner?'. Yes the outcome could have been worse but that doesn't make the day to day reality of bringing up your DD any easier.

Shonajay Thu 31-Jul-14 12:22:59

No matter what anyone says the way you feel are "your" feelings alone. My heart absolutely goes out to you but I can't imagine the day to day stress you go through, no doubt with a big smile on your face for her. Happy birthday to your dd and also to her wonderful mother- who keeps going when the going gets tough, like the star you are. Sending you a hug for later , when you are alone and feel like crying xxxxxxxxx

Sootball Thu 31-Jul-14 12:23:53

Thank you all

I think something which has come out of all of this is that we turned to the professionals and they let us down - they let my child down. Because they were human, they were utterly exhausted and it was the weekend and no senior experienced staff were on duty - there was/is no one person I can go to and say you turned my life upside down - you changed who I was and yet I have this desperate need to TRY and change someone elses future - to try to stop this happening. We had a cascade of errors - no single one caused this but together they caused a problem.

I don't want to change the world. I just want to make maternity services better - hypoxia occurs in so many different situations, so many are unavoidable, getting ethical approval to research pregnancy is hard, but there are some situations where better training, better communication, more staff, more money, more awareness. So if every year on her birthday I shout to the loudest forum I know that won't smother me in huns to say please please don't do what I did then maybe it will change someone elses life.

Is that arrogant? Or a desperate hope of a foolish woman.

Babbit Thu 31-Jul-14 12:25:43

I am moved to comment. Your words are powerful and I completely understand what you are saying. Happy birthday to your dd. Please don;t punish yourself.

Your dd is lucky to have you. You are able to understand and articulate the complex feelings surrounding what has happened.

I had a placental abruption following induction and I told the staff something was wrong but no-one listened. I was fortunate that when I was taken to the delivery suite (at my insistence) I was greeted by a very experienced midwife who knew exactly what was going on. She even took the time to talk to me about everything afterwards and "de-brief" me.

I never talk about it as I have heard stories like yours before and I feel very lucky the outcome in my case was positive, but I think about it often.

Sincerely, I am thinking of you and your dd today of all days.

SpottyTits Thu 31-Jul-14 12:45:39

You're not arrogant you could never be arrogant in wanting to save another woman from the ffrustration and pain you feel. It'snot the life you wanted for your DD but it was the one you got and you are ddealing with it amazingly be proud that after the daily battle you still have enough love and consideration in your heart to want to stop other parents from having to.

I remember reading a post on here regarding count the kicks while pregnant and through my pregnancy and anxiety it let me relax a little knowing that I was doing my best. If it wasn't for that post I'd have never known about the campaign that is so important so please keep shouting and I will raise my voice with you.

Happy birthday to your forever child she's lucky to have such a strong loving mother be kind to yourself today.

wrapsuperstar Thu 31-Jul-14 12:59:27

I am done having babies now (currently lying next to my 2 year old and 7 week old DDs) but your heartfelt post and warning has moved me beyond measure.

Happy birthday to your daughter, such a vivid picture of her charging about the garden in her dress and wellies! She sounds incredible and so do you. I am sure this post will stick in the minds of everyone who has read it and that, no doubt, is the start of changing things like you want to. flowers

ArcheryAnnie Thu 31-Jul-14 13:10:55

I don't know what to say, except thanks to you and a slice of birthday cake to your little girl.

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