A thread for Beatrice: Because a life filled with love is a life worth living.

[cupofteaplease]

We are back from the hospital, Beatrice has been fed and dh has gone to work. So I have time to sit down and start the first post about the journey ahead, which I hope will be a long and happy one.

Beatrice was born at 36 weeks weighing 3lb 14oz. After an initial diagnosis of Edward's Syndrome was proved to be incorrect, an MRI and genetics tests were carried out and today we have some initial answers.

Beatrice's brain is very small and underdeveloped. The consultant described it as 'simple', because it does not have all of the detail expected in a typical brain. She explained that we should expect Beatrice to be severly disabled. She is also very small and delicate, and at risk of catching infections. They anticipate that she may suffer from fits. They have told us to watch out for her breathing during feeding, as her muscles are weak. They also commented on her shallow breathing pattern. They believe the problem was caused by a gene that both dh and I must carry, but they haven't got the answers yet and admit that they may never know. They have ultimately described her condition as life-limiting.

However, we have left the consultation feeling at peace. We don't know what the future holds, but realistically, neither do the doctors. We have great faith in Beatrice, she amazes us every day, and she is surrounded by so much love from us and her wider family.

I would like to use this thread as a space to jot down how she is doing, and how we as a family are coping with life. If anyone wants to check in and follow her progress, please do. We couldn't have got through the past 2 weeks without MN.

hello Cup - hope today is a better day, it's such a rollercoaster and you've been through a lifetime in these last couple of weeks, please don't forget what an amazing job you are doing just keeping going, don't underestimate that for one moment.

If the combined respect and love of mn could actually pick up and carry a person you would be held so high so please don't ever feel you are alone or in a dark place without access to support, you're not boring people so get on a thread and scream, shout rant.....whatever you need - though I appreciate you might feel self conscious at the moment.

Oh and Bloody Doctors....what is the difference between a consultant and God? God doesn't think he's a consultant....

Hi cupoftea, just wanted to say even if Beatrice cannot see or hear (which I absolutely don't believe is the case, she can still feel your cuddles and kisses and warmth.

FWIW, I worked with two ladies who could not see or hear. One communicated with signs (holding my hands while I made the sign, then making sign back to me and I would confirm by signing 'yes'). The other used something called tactiles, little objects with meanings associated. Both were amazing. The one who used signs, I used to take her swimming and she'd hang on to my shoulders and paddle around the pool, making noises that made it obvious she was happy. She would touch my face and hair when I went to meet her, and then sign my name to say she knew who I was.

I don't think Beatrice will ever be lonely with such a loving family around her!

Some consultants are great and some are not. Some think they are prophets when in fact they should say 'I don't know' we were told ds would be paralysed and unresponsive, they were wrong but still kept insisting his responses were just reflexes. They were idiots but caused us an enormous amount of unnecessary stress with their proclamations. Take care of yourself too.

don't want to give false hope but it does sound like she is a little fighter.

Ds is a 27 weeker, 6 mins to revive when born, at 48 hours we were told would never walk talk or go to mainstream school. Erm, he is now nearly 11, yes he has some issues, but is also football captain at m/s school and in top academic sets for everything! much love

hi cup.

ok, the first two years are a bit grim, because no-one really knows. it's all guesswork, really. we were told dd2 wouldn't walk or talk. she failed every hearing test (about 9 of them) over the first 18 mos. no-one really knew if she could see until much later. to a large extend, consultants will always give you the worst possible picture without confirming it, really to cover their own backs, but also because it does allow you to access more services and give the child the very best chance.

it feels rough, i know. i spent pretty much the first two years crying. but it does get better. everything is so new and raw for you now, you just have to be kind to yourself and let everything sink in a bit.

dd2 walks, talks, sings (badly), runs (badly), hears perfectly, and sees fine (it's not perfect and she had a monster alternating converging squint until her surgery last year). she's worn glasses since about 12 mos (her first pair were pink barbie ones, to my everlasting shame as a fem ). she loves her ballet class, is learning to ride, and the sky is the limit, really.

no-one knows where your family will end up, but you have great support, and the knowledge of the sn board to gently turn you in the right direction if you get stuck. brain damage or abnormalilty is hard, because there are no 'rules'. no-one will be able to say 'this is what she will do', or 'this is what she won't do'. it really is a crystal ball, wait and see thing. but i will say, if the bea startles at loud noises, the child can hear. whatever the daft woman said.

but be kind to yourself. and let people see you cry. there's no harm in the world knowing it's tough. it is. and eventually you'll grow stronger.

all love from the mad house x

on a practical note, have you been walked and talked through your dla application yet?

So sorry you have had such badly delivered news CupOf. In the other thread I linked to a book on the brain that I have - it looks at the plasticity of the brain and the wonderfuly ways in which it can adapt. Please pm me if you would like me to send it to you [you can keep it - I've finished with it].

I haven't seen your other threads but wanted to say welcome to the SN boards - a very special place on MN - and congratulations on the birth of your beautiful girl, I took a peek at your photos and she is such a stunner, like your other girls.

I wish you strength and hope for your journey ahead, and also joy!

xxx

Hi Cupoftea
Just wanted to offer some empathy. The first few months are definitely the worst. When my DD was born it was all tests, tests, tests for the 1st few weeks. They picked up problems with both her hearing (moderate hearing loss) and her vision. She was subsequently registered blind but can definitely see lights in the interactive room. She also has an 'unusually developed' brain but in spite of all this she is happy, contented and much loved. She loves being outdoors, listening to music, being in the interactive room and hydrotherapy is one of her favourite activities. She has been canoeing, horse riding and trampolining just to name a few of the things she has done in her life.
You will inevitebly feel lonely when your DH is at work as he is probably the only person in RL who can share what you are feeling right now. I feel sure that once the hospital have comepleted all their tests, they will refer on to appropriate community professionals from both health and education, who will be ringing to come to your home and offer support & practical help and show you how you can best help your DD with her difficulties. By the time my DD was 6 months old, I had so many services coming to the house that I had to schedule them all in for 1 day of the week - otherwise we would never have got out of the house! (I actually went back to work 2 days a week when DD was 6mths old).
I think it is good that you have to go out and face the world on the school run as this keeps some normality in your life and you will have to face up to people sooner or later. I know it can't be easy, but at least you have that reason to get out of the house. My DD was my 1st born, so I didn't have that outlet - and I felt that all the people I had met through my pregnancy now had nothing in common with me - until we started at the SN playgroup once a week - which was a godsend.
You will get there, you will have your strong moments and you will also have those moments when you feel that your whole world has fallen apart - but hang on in there - you will come out the other side of those dark times. Believe me, I went through it all nearly 17 years ago.

cupoftea

My ds1 is 8.

When he was born we were told - variously - that he would be blind, deaf and that he might never sit up unaided.

Ds1 is now in year 4 of a MS school and doing well. He can swim, ride a bike is an orange belt at karate and is a very fast runner. He can feed himself and toilet himself.

I simply would not have believed this was possible back then....I imagined a life for him of hospital appointments/therapies/having to think about altering the house/special schools....

Agree with madwoman The 1st 2 years are grim but you get through it. My ds1 got me through it, just like B will get you through it x

Aww cupoftea sorry you've hit a low.

I agree with others above who have stories of children acheiving despite what was believed. There's some amazing stories here.

I work in special ed and we have a girl of 6yo who's condition is apperently not compatable with life - I just think she didn't get that letter from the consultant because she has other ideas! And best of all she is a very happy child.

I'm so glad to hear Beatrice is responding to light and sound. It is common with children with neurological conditions/ problems to have disrupted messages and it seems common that GP's/ consultants give the 'worst case'. I guess so that if they are wrong it's a good thing iyswim?

Sending positive thoughts and strength to you.

Everyone has already said what I want to say in much better ways than I ever could so I just want to say that I'm praying for you and thinking of you. x

Oh cup, I'm so angry on your behalf that you have such an insensitive lump of a paediatrician who copied you into that letter! And her response to the hearing test too!! I think you should trust your instincts - you believe her to be hearing and seeing you through her behaviour so unless/until that changes keep smiling and blethering to your little girl! Hope things seem more positive tomorrow, x

i TOTALLY AGREE WITH WHAT OTHERS AHVE SAID. tHEY DON'T REALLY KNOW IN THE FIRST 2 YEARS. tHEY GIVE THE WORSE SCENARIO TO COVER THEIR BACKS.
Whoops- sorry for caps!

Please ask to be referred to a neurologist- ours knew so much more than the paed who has been majorly wrong on at least 2 occasions. The first being that he wouldn't survive the first few weeks, the second one being that DS didn't need surgery, when he did need it and referred me to the surgeons to placate me and I was proved right.

Cupoftea, that must have been a real shock. But please take comfort in this:

That letter, hard as it was for you to read, could save Beatrice's life, if you get into real trouble.

Because that letter will have 'flagged' Beatrice, to you, and crucially, to the GP surgery.

Imagine if you knew that she was really, really, poorly, and the GP receptionist wouldn't let you have an appointment? Or if you weren't sure how hard you needed to fight for it.

Now, you know there is a letter on file that says, in medical speak, 'Beatrice is a priority. If her Mum phones, you jump!'

If you ever need an appointment sharpish for her, all you have to say is 'You have a letter on file that tells you how important it is for Beatrice to be seen if she is ill. I NEED an appointment, NOW.

You are doing fantastically. Beatrice is a lucky little girl.

the gp was petrified of dd2. if i ever turned up at the doc's office, they would call the hospital and send me there, even she just had a cold. i like lougle's emphasis.

lougle is right (as usual!!)

riven

Now I think about it, the GP always sent ds1 straight to hospital whenever I took him for his 1st 2 years or so....they just didnt want to deal with a child whose problems they didnt/couldnt understand!

cupoftea, you've probably not considered this, and you may not be able to face the form or what it reaps but have you applied for Disability Living Allowance.

YOu may be thinking 'WTF? I don't want money or 'compensation' etc.' which is fair enough but:

I know it seems like a trivial thing in comparison, but an extra bit of money could mean that you can afford to get some help in with the housework or a play therapist for the other children to help them work through their emotions etc. or just some trips that you wouldn't otherwise be able to afford.

lol starlight, that was my question earlier i haven't been following the other threads as they're too big, but hopefully someone along the way was dealing with the practicalities as well as offering emotional support!

Ooops!

Cupoftea you are doing such a fantastic job for your beautiful, beautiful daughters xx

great minds think alike.

Cupoftea - haven't read the whole thread but just wanted to say welcome. Am moved by what you have written.

lougle how to make that glass half full! I am impressed, such good advice.