Introducing myself - long (sorry!)

[Guest guest]

Hi everyone,

My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

to (36) and we have twin daughters through IVF, Jade & Taya who

are 4 and have just had another little baby girl, Sienna, 8 weeks ago

who has been diagnosed with MDS. During my pregnancy I had the tests

and they were all normal. When she was born the doctor took her away

for 'oxygen' (we even knew at the time that was wrong because she

didn't need it), what he was doing was checking her out and giving

her a blood test, he brought her back to my hospital room an hour

later and told us that he thought Sienna might have Downs. Well

straight away I went into denial, I couldn't believe it was possible

that MY child would have downs syndrome, that only happened to other

people. I looked down at Sienna and REALLY looked at her and that's

when the tears started, because I could see it, I could see the slant

in her eyes that my other daughters didn't have, I could see the

roundness in her face, I could just SEE it. For the next three days

waiting for the test results were like hell, I spent them crying,

shaking, having panic attacks, basically I felt like I was losing my

mind, I stared at her for hours on end and I started not to see

anything wrong, then I was sure the doctor was wrong, she just looked

so 'normal'. In the meantime this new little baby was lying there

needing her mummy and although I still breast-fed her and cuddled

her, I just felt so disconnected to her, I had horrible thoughts,

like I wish I'd never gotten pregnant, why couldn't I just go back to

how it was before she was born, how could this of happened to me,

awful, selfish things like that. I couldn't even call her by her name

without feeling like I was going to have a panic attack. I never left

the hospital room because I didn't want anyone to see her and I

didn't want to see anyone else's 'normal' baby. On the third day I

was in a cold sweat all day, I knew I was finding out that day and I

was dreading it, I didn't want to know, I didn't want it to be real.

We had a room full of people (visitors) and I knew that if the doctor

came in and told everyone to leave then it was bad news and if it was

good news he would just say it in front of everyone. Well, he came

in and told everyone to leave. I fell to the floor and sobbed. It

was the saddest, scariest moment of my life. He told and

myself that Sienna had mosaic downs, that in terms of DS we should be

happy, that this was a good outcome, I just looked at him with

disbelief! how could I be happy? how could this be a good outcome?

We took her home 4 days later, somber and sad, not happy and

celebrating like we'd planned.

It has been 8 weeks and some things have changed for me since then.

The first and most important thing is that I have fallen deeply and

madly in love with this little girl, she brings me peace and and

calms me when I am feeling so scared and sad, which I have to say is

most of the time. My other two daughters are madly in love with

their baby sister and smother her with love. (who bonded with

Sienna straight away at the hospital) is madly in love with her. She

is totally surrounded by love. But I am still so desperately sad

and I am horribly frightened. I am so scared for what this means for

Sienna's future. My dreams for her feel lost - school, job,

marriage, children, independence - will she have any of this? why has

this beautiful little girl been cheated of these things? it is so

unfair for her. I hate that this has happened. I feel like someone

is screaming in my head 24 hours, I can't turn my mind off, just

thinking about it all day and all night. I search Sienna for 'signs'

and get so frustrated because I can't see any, she just looks like my

other daughters did when they were babies, she is strong, she has no

physical outward symptoms, her heart is fine - all these things

confuse me - does this mean she doesn't have it as bad? or does it

mean nothing like that? I think, maybe they made a mistake, but then

I know a blood test doesn't lie. I am terrified I am setting myself

up for heartbreak by thinking she is doing so well, when she is only

8 weeks old and it could all go wrong very quickly.

So that is where I am at the moment, sorry if I sound so grim, I so

badly want it all to feel 'OK' and I want to accept it and move on to

different things, like what can I do for her now, what can I learn to

help her. Contacting this group and writing this down is my first

step I have taken to accepting this as a real thing in my life, I am

hoping it is step in the right direction.

Thank you for taking the time to read my story and I look forward to

meeting you all and getting to know you.

Seph