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When I gave birth to my first child, I was in hospital for 4 days, put in a seperate room and left to wait and hear confirmation that my beautiful baby girl had been born with Down's Syndrome. At no point was there a friendly, knowledgable face to reassure me or talk to me about what could lie ahead. I'm not sure whether this would have been good for me at the time or not, but it would have been good to have the choice to talk about the situation. The nurses/midwifes did not seem to want to talk about it with me at all, I felt really isolated. Does anyone else feel that having information at the hospital or from your midwife about the particular diagnosis would be helpful? Did anyone else have to wait for a long time before anyone really talked to you about it at all?!?
What would have made the situation better/easier for you?
Just another bit to add to the melting pot; some people don'tknow there is anything amiss for maybe weeks, months or years. My sons did not get their various diagnosis until the earliest one at 3 years and the latest one at 13 yyears!
I would definately have liked more information at the time and also the opportunity to return for a further appoinment in a months time once I had had the opportunity to digesst the information I had been given.
I really think that sometimes in the emotion of the moment you cannot take everything in, so when the consultant asks if you have any questions nothing much comes to mind, however once you get home and over the next few days so many questions come to mind needing an answer.
I think tghat consultants should have printed information to hand too for people to take away and read, this should contain information of relevant support avenues for families.
It will be interesting to hear others experiences and others thoughts of what could make a diference.
My exp was much like yours MR. I was kept downstairs in a delivery room for two days until I was moved to a room alone on the 'miscarrage' ward. We could all hear all the babies crying at night and I was paranoid, my girl had been taken to another hospital and I thought they were preparing me or had forgotten to tell me! After three days finally I made it to the SCBU she'd been sent to in the next town. Scans confirmed global brain damage The lowest point of it all was the day they told me they were taking her off the ventilator and if she didn't breath - she wouldn't be resuss'd. You're scared for the present, the future, and no one can give you a straight answer. Instinct told me she had CP that first night in the new hospital (I was put on a seperate room on the Mat Ward) it took 9 months of persistance and begging for a real diagnosis. And the relief I felt just having someone be honest was amazing. Her Paed was busy rubbing my leg ready for my tears - and all I could say was, 'Thank you - that's all I wanted'
But I see other parents floored years later - obliviously hopeful that their child would catch-up, be okay, recover! There's no easy way - and 7 years later my theory is this... However your treated, however and whenever you're told, it'll never be right. You want your babies to have everything. I'm not sure there's a 'better way' and at times I appreciated my isolation & ignorance, focussed on loving her and nothing else.
I now pity the Professionals - they don't want to tell you, they don't know how too, they want to tell you good news as much as you want to hear it. They need positive training on dealing with disability to give parents hope. But then I'm pretty sure I'd have kicked someone if they'd have told me 'its not that bad, don't worry!' because you do and you will. They are your babies and only you know how you feel and only you can deal with it.
The only thing that I would change about what happened to us is that as parents we should have been told together about my daughter's diagnosis
My husband was told before me ( and well you know what men are like lol - no offence to men cos they're not all the same ) but my husband was not good at giving the news to me, finding the words didn't come easy ( I don't think they would to anyone really )
It would have been much better to be told together.
On the whole the rest of it, our Paedrician was fab, she gave us details of the support group, our health visitor put is in touch with parents who had another child with the same diagnosis ( I desperately wanted to talk to other parents to know that I wasn't on my own with all the guilty feelings I was having ) and so I wouldn't have changed any of that
When I gave birth to my son in 2000, my partner immediately noticed that he had the facial characteristics typical of Down's syndrome. I hadn't noticed, all I could see was my dear mum in him. I asked my midwife as she was dealing with after birth things, if she thought he had Down's. She was quiet for a moment and then very gently said 'yes, I think he might have, but I'll get the doctor down to have a look at him'. The doctor proceeded to point out with relish, all the physical characteristics that undoubtedly meant he had Down's, the square hands, the heart line missing in the palm of his hand, the large space between his big toes, the rings of stars in his eyes - my partner said 'oh, that's cool'. I felt this all to be too flippant but at the same time was relieved at his positive tone of voice. The worst bit was the Down's Syndrome Association leaflet that my lovely supportive midwife brought to me in my room which said: YOUR CHILD HAS DOWN'S SYNDROME, in huge shouty letters. The leaflet was archaic in feel and I felt as if I had entered another world where having a nice life was not going to be an option. I just hope it has since been sensitively redesigned to offer reassurance in a way that is in touch with todays world.
My son is 7 now. He was born with down syndrome in Bristol which was unexpected for us as the nuchal scan said otherwise. It was a tremendous shock. We had a "family liaison" worker who was as much use as a chocolate teapot. She gave me a book called down syndrome. the facts. It was a load of nonsense to give a grieving mother this type of outdated book. In my view the medical staff were not trained to deal with this and had no idea how to help. It compounded my thoughts about the quality of care parents in this situation are given when I found out 6 years later that he had brain damage, a cerebral palsy. He is much loved in our family but the truth is that it's only me who carries the weight of this. It is a constant battle to get help, there is no clear path to anything and as we were fobbed off for 6 years that he only had DS when in fact we discovered he had brain damage aswell. I think medical people should be made answerable for their errors and should be better informed on services and places for grieving parents to go to.
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