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.

Well done Bea :) and Cup. Glad the Ponsetti Treatment is going well. Have you got the barium meal booked?

Every week and every ounce is progress, even though the sickness must be very wearing and concerning for you all.

Hope you're finding some moments to recharge your batteries from time to time. You're doing fantastically well!

Cup Was thinking about you and your family today; had a look at your photographs! Your girls are gorgeous!!!

Hope that you and your husband are coping well! It's very difficult to imagine how you both feel but, rest assured, that you have hundreds (if not thousands!) of people rooting for you all!

With very best wishes

I've been following Team Bea for a while now and you are all amazing. She is so beautiful and I love the new photos.

I don't have lots of practical advise but I'm here cheering for you and especially so each time Beatrice proves Dr Doom wrong again.

A while ago you were finding it hard sometimes on the school run with everyone. I did try to post then but the computer kept eating my posts. Do you have a friend who you could collect the girls from inside the school and bring them to you outside? I had to do this when my youngest had chickenpox. I remember you live quite a way from the school and didn't feel able to ask anyone to collect them for you but this is not too much to ask of someone on a day when you just can't face everyone.

Also re her smile, if I remember correctly Beatrice was born early so this will affect when she reaches her milestones.

Urgh, having a crappy week.

In brief: Bea's barium swallow and meal has been booked for the 9th January- I rang up to say this wasn't acceptable, she was meant to have it within 10 days and got told, sorry nothing doing. Tried ringing Bea's consultant, her secratery only works 3 mornings a week. So frustrating.

Nurse came yesterday and confirmed that we should have applied for DLA under Special Circumstances. So not only is that a negative in terms of Bea's prognosis, it also means she has missed out on 10 weeks of financial support that she should have been entitled to.

Nurser also confirmed that when Dr Doom saw Bea at 3 weeks old (start of this thread, anyway), she didn't expect to see her again. I just feel so, so sad to hear that. It feels like nobody has any expectations of Beatrice, only her mummy and daddy. (And her massive family and all of MN, of course!) But the medical team don't appear to give a damn.

Apparently, 'If Beatrice is still alive at the end of January', the consultant will refer her to a bigger hospital to see the neurologists and put us in touch with children's support services. Why not now? Why must we fight on alone and unsupported?

We have been told she is life limited, why haven't we been referrred to a chidren's hospice? Where is the support for her big sisters? Why have we been forgotten?

I feel incredibly low today. Low and lonely, even though I have met up with some good friends today. I just feel I could feel alone in a crowded room at the moment. Isolated might be a better word to use. I kind of want someone to take over for me. I wish my dh was at home more. It's all so overwhelming.

And in the middle of it all is my darling, darling girl. My gorgeous Beatrice who has no idea of the love and pain I feel, and how I would rather die than have her leave me. I'll never be ready for the day I have to say goodbye.

Oh Cup short post as just about to put K to bed but couldn't read and run. Firstly have a you sound wrung out and tired. I don't blame you. Secondly, Bea has got this far, overcome so much and is doing so beautifully I am so that you do not have the back up of a supportive and encouraging medical team. You must feel like you are living in limbo with no-one fighting your corner. It must be exhausting.

How are your older girls doing? Have you spoken to Winstons Wish at all? They may have some practical advice for your lovely eldest dd's.

I don't have great advice like some other posters on here but I wanted you to know I often think of you and Bea xx

Not that short

cupoftea - how exhausting to be feeling like this, with the weight of everything on your shoulders. I can only second the advice for Winstons Wish, they have supportd my best friend both practically and emotionally through some terrible times and more importantly helped her 3DCs cope, for several years now - so they are in for the long haul.
If Bea has had an ok week. then nothing has changed except the support you are receiving - she is still doing all she can to prove them wrong! and they need to see this.
Much love.

Hi Cup,
I've not posted before, but I've been reading the thread regularly and it's been inspiring how well you've all been doing. It sounds like this week has been so difficult. I'm sending you all a big hug. You really are an inspiration and the title of this thread is perfect. Bea is certainly having a life filled with love, so many people are thinking of her and your family.
I can't think of anything to say that will help you feel better! But i'm sending you all lots of positive energy and I hope that Bea continues to make the brilliant progress she's been making.
Cake xxx

Oh darling I am so sorry

If it's any consolation they said my DD wouldn't live a day, then a week, nor a month then they said they were surprised she made one year old.

She's now nearly 8 and still a stubborn bugger

I think as parents all you can do is live each day as it comes, and let your child make the rules up as they go along. I found if I had few expectations of DD2 then anything was a bonus. The doctors tended to err on the negative side and they don't live with your child 24/7 so don't see what we see ie the grit and determination in us and our baby!

Apply for DLA now (they may backdate it with clinical support) and ask to be referred to a hospice for the support you may need - I hope you don't and it isn't needed but at least if Bea becomes more poorly they will know you and be there for you.

I know what you mean re the isolation - I always felt as if I was on the outside of life looking in. A bit like that bit in The Matrix where everyone is going about their business and he's watching them and they don't know he's there.

Hugs to you cupoftea and kisses for your beautiful girls xxx

Bea is unique, she will be teaching the Drs everyday. Agree you need the support of others who understand your dilemmas, you love Bea with every ounce of your heart but that doesnt mean you can cope or understand what's happening

MN believe in Bea

Not a new poster, just name changed. Still praying

You're not that far from Helen House in Oxford. Why not give them a ring (if you have the strength) and see whether they can do something for you?
It's outrageous that anybody should give you the impression they are only waiting for Bea to die. It's wrong and it's mean.

Cup- I second what Dutchoma said. Once the hospice is on board they will kick everyone's ass. Our hospice is fab for that- they sorted out DS1's counselling, when I'd given up chasing an appointment and helped us find a charity to help fund Ds2's sn buggy and are coming to a big meeting next week to help sort out stuff for DS1 (even though technically they care for DS2). They know all our medical professionals and even mentioning the hospice name carries some clout. If you don't feel able to contact them yourself, your HV or social worker (if you have one) can do it for you. Or even your GP.

I've been reading this thread but haven't posted yet. Like everyone else, I have been amazed by your strength and positivity. I have been watching BeaKs progress and thinking of you all a lot. I canKt begin to imagine how you must be feeling now. Bea has surprised the doctors before and praying that she carries on fighting. X

I keep drafting and deleting posts for this but they boil down to: you are doing something incredibly tough, make sure you take care of yourself so you can take care of your family, and just keep putting one foot in front of the other. We are all sending you and all your family lots of love and best wishes xx

Cup, you must feel like you're battling a huge, impersonal hospital machine with disconnected depts and professionals without a coherent plan for Bea. I guess most of them are doing their best but they could do with some join-up thinking for children like Bea too? It feels so personal when it's our own child - I'm sure they (mostly) care, but their "system" sounds like it's lacking.

I'm undergoing treatment atm and the best support I have is from the people on the helpline of a charity to do with the condition. They have the time and experience to talk me through best practice and arm me for getting in there to get the best treatment. Could you find similar?

Also your hospital may have a PALS a patient liaison service that supports patients when they hit problems with individuals and dept and smooths out problems and even helps you complain if necessary. That's the theory - I haven't used mine yet but am probably about to!! You might fnd they have some info that would help.

Thinking about your lovely family and praying for little Bea that she heals and flourishes. Much love x

Everytime I read your posts cupoftea I am really impressed at how you are fighting for Beatrice and trying to juggle everything and keep yourself going when you get bad news, poor communication from professionals, etc. Beatrice and her sisters are blessed to have such a wonderful mum.

The suggestions above on contacting the local childrens hospice and Winstons wish may get you some more practical help on Team Bea to fight her corner to get what she needs and to help all the family. Just investigate it, you dont need to take anything offered to you but even a night off knowing that Beatrice is being well looked may help a little.

-well looked after-

Thinking of you cup - sounds like an awful week. love to you and the Teaset - may Bea keep surprising the health professionals and filling your days with newborn delight.

You are doing a fantastic, amazing job of caring for Beatrice and fighting for her and I wonder if you should tell the medical staff what you have told us. Tell them they are being really negative about Beatrice and don't they realise she hasn't read the books so she doesn't know she is meant to be "not here" and do virtually nothing . They need to stop being so negative and deal with Beatrice as an individual baby and act accordingly to how she has progressed that day.

If I lived nearer I would help you in a heartbeat.

Oh cupoftea - ((((hugs)))) for you all. After thinking they were starting to be more positive, what a slap in the face for you to realise that they're still expecting her to slip away. What a load of crap that they are being so unsupportive under the circumstances.
Have you been to PALS to discuss your feelings about how you and Bea are being treated? Because that is what they are there for, so it's worth going. IF they are so sure that Bea isn't going to make it, then you are right - they absolutely should have put you in touch with some type of support team, not necessarily hospice because she is unlikely to need hospice care, but some kind of support.

I don't know about this day and age, whether or not you can get any DLA backdated - I know other things could be backdated for a max of 13weeks, but things have changed so much under this Govt that who knows - and I know that the money isn't the point and you'd rather not have any need of it; but if it could be of help to your family, ask someone if it's backdatable and put in your claim. Get someone to help you fill in the forms as well - health visitor or someone.

Stay strong lovely - Bea's proved them wrong every step of the way so far - we will all pray that she keeps doing so for a long time to come. Have some as well. xx

I would ask for, no insist on a referal to the childrens hospital now, and in the meantime have her case tranferred away from dr Doom. Somethings don't add up like why do the leg casting, hand splints if they are still not expecting her to live into at least the medium term.

You need a more supportive team around you, stamp until yoiu get it. If necessary contact PALS, even an email in our area classes as a complaint and will get things moving and trust me it will.

Correct me if I am wrong but all the support she has to stay alive at the moment is ng feeding? SO she is maintaining her own oxygen, temp etc. I know she has a not good MRI but it is not like she is in SCBU with them maintaining all her functions.

Bea and you all deserve a better plan in place, better support and drs that care ( believe it or not there are a few of them around).

cupoftea, I haven't posted on your thread before as I never feel I have anything to add that hasn't been said by so many wonderful posters.

Do contact you hospital patient liaison, they can really make a difference.

Bea and her big sisters are all absolutely gorgeous by the way. I am so sorry you are all going through this.

Nothing to add except my love to you and Beatrice the Brave.

Cup, as others have said see if you can "self refer" to a hospice; or ask your community nurse. The fact that she has needs which are "limiting" in terms of what she can do, (as opposed to her life expectancy being limited) should make her eligible for help. There may also be other options locally; you could try Contact a Family - www.cafamily.org.uk who may be able to help you find local support groups.

You may have a "Carers Centre" nearby, which can give advice, and it's quite likely that they run "Young Carers" groups which would provide some level of support to your other children.