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.

Oh, cupoftea, that is hard indeed.

I can't imagine what you are going through and how dark the dark places must be, especially when you are alone. Is there someone who could come and be with you or pop round occasionally, as your DH is away so much now?

Please don't feel guilty at being negative. Yes, Beatrice needs you to be strong, but you also need to work through everything you are feeling, and it would be impossible for you not to wobble sometimes. If the tears are gathering, maybe it wouldn't hurt to let them spill over every now and again.

What the consultant wrote must be unbearable to read in black and white. And the scoffing must also be tough to deal with - but if you think your daughter is reacting to noise and light, you are very well-placed to have such an opinion, I think. And if you are wrong, then yes, a life lived in darkness and silence would be very difficult, but you and all your family have already helped Beatrice immeasurably by showing her so much love and faith and will continue to do that, which is the best gift ever for her.

You and Bea have both done so well up till now, and I'm sure you'll find a way to keep going together as best you both can.

Oh cupoftea. How incredably hard this must be for you all. I really don't have the words but having just read your last post I couldn't not comment.

All you can do for Beatrice is love her and give her the best possible environment to grow and you are doing that in spades. Stay strong - you are doing such an amazing job.

try to focus on what beatrice is doing now and take things one day, one hour at a time. you're doing great. try not to worry about what can happen.
i guess its the docs jobs to focus on the negatives a bit. you keep focusing on the positives. if the worst does happen you've shown that you'll cope i think, but the for the time being do the best you can with the situation as it is now, which is getting better i think....

Aw jeez, CupofTea - they really know how to put the boot in, don't they? I know that you need to know the score but FFS there are ways to say things with a bit of sensitivity! :(

I think if you can see her responding to sound, it's more than likely she can hear it - or she wouldn't respond. What her brain makes of the sounds at this stage is anyone's guess, probably for any newborn though! Ditto the light.

Is this the same consultant paed who gave you the original (and wrong) news about Edward's syndrome? Because, if there is no absolute need to continue with her, you can ask to change consultant. Again, remember that they have been wrong before and they could be wrong again (and you know what - I'd consider talking to PALS about that comment re. the machines working - there is no need to be that blunt/pessimistic about stuff! She might want you to face up to her perceived realities of the situation but they may be wrong, and she is not demonstrating good patient skills, which could be addressed)

Lots of (((hugs))) to you and all your family - keep believing that Beatrice is fighting the good fight with all her might and take it one day at a time.

Re. her muscle stiffness situation - have they offered any ideas on how to relieve that? Or are there no apparent solutions to it?

Oh cupoftea how hard it must have been to see that written down. It must be a good sign if Bea is reacting to light and sound. Keep stimulating her and I'm sure she'll surprise you once more.

It is very difficult when your partner goes back to work I know. It can feel very lonely and a bit like they've got a piece of their old life back. I so look forward to 3.15pm when I can get dd and the house is noisy again. I'm going to say to you what you said to me. It's okay to break down and cry and can even make you feel a bit better afterwards once you've let it out. Beatrice has everything she needs just by having you there. Thinking of you xxx

Oh and another thing - IF they are right and Beatrice has no sight or hearing, then look at Helen Keller and what she achieved. :)

Hmm, you do wonder if the health professionals could have done (even) better here. The consultants letter to your GP just a little more gentle, the paedetrician a little more encouraging about the hearing test, and maybe the community nurse could have stayed around while you opened the letter together to offer some support, and not just hand it over to you.
I know most people do their best, and there is a lot of pressure in health-care. But often seems there's a way to go yet in patient care ?
Your thoughts about hearing and seeing reminded me of Helen Keller. She said some amazing things. I might go and google her and come back later ...
Hope you have a better day today "cupoftea"

Oh to see that must have been so hard. Are you getting any support? Is there anyone you can talk to about the letter?

FWIW If Beatrice is moving towards sounds then she can hear. My son passed his newborn hearing test but didn't react to any noise at all for months.

X post with thumbwitch !

Thanks for replying (again!).

Whatever, I also find it a bit easier when the dds are home as it distracts me and I have to keep the normal routine. I hate doing the school run though as I don't like taking Beatrice out and around hoards of people unnecessarily. Unfortunately, the school run can't be avoided as we live a 10 minute drive from their school, so there's noone I can ask to help. And anyway, life has to go on, and I have to do normal things like collecting my girls from school, they deserve that from their Mum. As for the crying, I'm putting my full make up on each day to deter me from bawling my eyes out and getting mascara and eyeliner running down my face! Seems to do the trick most of the time.

Thumbwitch Yes, the letter and meeting were with the original paediatrician. In fact, when I read the line out to dh that I quoted up thread, I did state, 'Well you also thought she had Edward's Syndrome as well didn't you, so stick that in your pipe and smoke it.' But then I put the letter away and felt a bit less brave and actually a bit sick about the whole thing.

Oh cup - what a horrid thing to put in a letter. The thing that jumped out at me though was your community nurse being delighted with how content Beatrice is.

Cupoftea I also thought about Helen Keller the minute I read your post. But I agree if she responds to noise and turns towards the light then it would seem that she can see / hear something.

Just keep holding her, touch will be one of her most important senses so as long as she can feel you there she will never feel alone.

I feel for you having no one to help with your DH at work, I imagine it must be hard for him too feeling that he's leaving you but knowing that he has to provide for you all as well.

Do you have friends and family locally who can help or is there any local support so that you can have some company in the day - it must be hard to stay positive sat in on your own trying not to reread that letter?

Just remember that no one knows what Beatrice is capable of at the moment and you know her better than any of the medical professionals as you are with her all the time. They may feel they are trying to prepare you just in case the worst happens, so take what they say with a pinch of salt and concentrate on being positive as I'm certain Beatrice will be able to sense your mood and will take strength from you.

at the full face of makeup - exactly what I do when I have to face a challenging day it always seems to work.

Thinking of you and hope you have a good day x

Sweetie, I really think that you should say something to PALS. Your situation has been traumatic enough so far without the added weight of an insensitive doctor. But of course it is entirely up to you and what you feel you're up to dealing with at the moment. And yes! She was the one who got the original diagnosis wrong and is apparently having some trouble dealing with that! Work on that principle (that doesn't mean ignore everything, obviously, just you don't have to take on her pessimistic view on it :))

cup apologies for the bluntness of this post but sometimes I get so cross the 'professionals'

I find it very hard to imagine that those beautiful, vibrant eyes aren't taking the world in in some way or another - when you look at her pictures, her eyes just draw you in they are so beautiful. And the op'gist said they look ok so fingers crossed in 6 months time she'll show us how strong she is again.

And as for the scoffing by that dreadful, dreadful woman, I don't know how you didn't scratch her eyes out! If she is reacting to the toys and sounds then she is hearing something - so scoff all you want dr death that little girl is proving you wrong time and time again!

From the original misdiagnosis to the (I believe) bordering offensive patient care she has shown no regard or respect for you, bea and dh so you would be well within your rights to have her taken off your case (and send a stonking great complaint letter to PALS).

Please don't ever feel bad for feeling close to tears or being faced with the darker places. You continue to amaze me with how well you're coping and there will be dark times but hopefully these will be outweighed by the lighter ones you share as a family. Don't keep it bottled up though - you need to care for yourself as well as your family x

Sending lots of love to you and the girls xxx

Cup hugs

Are you getting counselling? Consider it when you are ready; Dh started with some after our third was picked up with SN (not as severe as Beatrice might have but cumulative IYSWIM). It has helped him. I otoh have ahd none and am no doubt the stupid one for that.

Can't see how a child who can move her head to sound and music can;t hear tbh but there you go.

What's the next step? Would somewhere like BIBIC (google it) be up your street? Costs but you should be able to apply for DLA eventually.

Anoher one with the make up as well LMAO- after ds1 was born, a birth that invoved full on eclamptic fits, I ahd the slap back on in minutes: yet don't always bother when on an even keel.

Cross AT the professionals!!

Also ditto what pebble says you are the one with her all the time and you are the only one that really knows what she can and can't do so try and focus on the positives (yay for the feeding progress - another giant step for a very determined little girl!) and put the verbal and written words to the back of your mind. Xx

cuppa you are doing amazingly well being so brave - my heart goes out to you

still here and still reading, how lovely to hear how she is reacting to sound and light and regardless of what the rather insensitive professionals have said remember you are her mummy and you see her all the time and you know her best!

i second/third/fourth what has been said about changing to a diff consultant if you arent happy with the one you have and its good you have a supportive and kind community nurse.

lots of love and strength xx

cup xxx
i know it must be so hard when your emotions are all over the place.sometimes you have to take one day at a time - when dd was this tiny it was one hour at a time in hospital.so awful but each day you spend together will give you more idea of what to expect in the future.
you will get to a point where you know your dd better than all the doctors and will trust your own judgement more.this will really help you.keep on doing what you are doing.
i found being out and doing things with others was a nice distraction.
you have some really positive points to post about bea with regard to her hearing and how you think her eyesight is - also her feeding is good.all of this sounds great so far.
best of luck xx.

Cupof I believe strongly that prognosis for things like this are like when predicting the weather. You can have those expert met office people analysing charts and patterns and then telling you what will happen tomorrow, but actually the most likely and statistically accurate prediction is simply looking at yesterday and forecasting that for today.

Why would she have a sudden demise? She didn't yesterday!

Firstly I'm sorry you're having such a tough time but congratulations on your beautiful baby girl.

I'm not a medical expert but there are many people on this thread (board, in fact), who have first hand experience of overly negative diagnosis / prognosis in very small babies, even very recently. There is so much even the most "expert" experts don't know about babies' amazing brains, I really feel a lot of it is not much more than guesswork (much as Starlight eloquently said). It is hideous to read that about your daughter in black and white but it does not mean it is going to happen.

Make sure you take good care of yourself so you are in the best position to take care of your family. Wish I could give you a big hug.

Cup Of Tea, I am in agreement with the others who say that if Bea is reacting, being startled and turning her head to sound/light then there is a really good chance that she is hearing and seeing something at the very least.

Your consultant sounds hopeless in terms of sensitivity and bedside manner. If her negativity and exaggerated unhelpful manner (the scoffing etc) is making this bloody hard situation even more stressful and upsetting for you then you really should ask to change consultant. You owe it to yourself and Bea to do so. You might have to deal with this woman for years to come and you could do with being treated with respect and understanding. She might well have felt obliged to inform you that the hearing test was not conclusive but she could have done so in a sensitive, gentle way and also been encouraging about Bea's positive reactions to lights and sounds to date.

Sorry that you are having to cope with so much.
Have you said where in the country you are in case any local mumsnetters could meet with you for company and to provide a little distraction? of course I understand if you would rather not say xx

xx

Nobody knows your little girl as well as you do. The so-called 'professionals' see her for very small amounts of time in spaces that she is unaccustomed to. Of course they can't possibly get a full view of what she is capable of then! You have seen her respond to sound, therefore, she can hear it. You have seen her respond to light, therefore, she can see it. Nobody at this point can say how well either of those senses are working - it's the same for all babies.

I do very much wish there was a course in tact at medical school, so many doctors seem to lack this basic skill.

Just read your updates & as others have said you know your baby girl better than anyone. She is definitely a tough little cookie who is going to fight the negative doctors every step of the way & she has you, her mummy, fighting her corner. Have a good cry, we all need that sometimes then give Bea a great big cuddle & carry on. You are an inspiration to us all.
Love to you & your family x