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Original poster

Help me, i have just had one of those phone calls you dread.

494 replies

largeginandtonic · 01/04/2008 13:28

DD has seen a consultant for tests recently, she is behind at school and seems emotionally immature. We had lots of academic tests done, took about 2 hours. She seemed to do ok.

We were then sent to the hospital for blood tests. I have no idea what for. The hospital just phoned me and said can the consultant come to the house one evening this week and speak to me about the results. They said they need my husband to be home too.

I am terrified. Has anyone else had a consultant come to the house? Am shaking and cant get hold of my husband or my mother.

She is coming tonight.

OP posts:
Saggarmakersbottomknocker · 02/04/2008 11:15

LG&T - I just wanted to say that it's OK to be wobbly. Take your time to get your head around it and don't feel there's a right or wrong way forward. If you feel the need to go and yell at the moon then do it. Weeping along to a song in the car can be quite cathertic.

There is a grief here to contend with among all the practical worries that you have. The loss of the daughter you thought you had and the dreams you had for her. She will be OK though; better than OK, she'll do just fine.

Original poster
largeginandtonic · 02/04/2008 11:27

It is just that Saggar, i had dreams for her. I am baby mad not, and couldnt wait for her to have her own and i wanted to be there holding her hand as she puffed and panted (just as my mother has done for me) I feel so sad for her. She is my only little girl too.

Of course with all her brothers she may decide to avoid babies altogether! I just feel like all her choices have been taken away from her.

She will have to have growth hormone treatment daily i think until a girl would naturally stop growing. She is little but not by any means noticable i dont think. I have lots of questions for the specialist. I am going to start maing notes i think.

OP posts:
Spatz · 02/04/2008 11:29

A friend of mine has Turners and did have a child with egg donation. They are planning to have another, but went to the US for it because it was better organised over there, I think.

Christie · 02/04/2008 11:31

This reply has been deleted

Message withdrawn at poster's request.

Saggarmakersbottomknocker · 02/04/2008 11:31

My dd has a chronic health problem LG&T and I remember the babies thing being at the forefront of my mind when she was diagnosed. That and the fact she'd never play for the netball team It was mad TBH because she was fighting for her life at the time. I understand how you feel. Hugs.

And yes. Start a list of questions.

eternalstudent · 02/04/2008 11:32

LGT, my sister has Turners Syndrome. I know a fair bit about it. She is now 25 and has been through all the rigmarole - growth hormone, progesterone and oestrogen, etc etc etc etc. She is entirely normal.

If you have any q's you think I can help with my email is jimandele at yahoo dot co dot uk

cheesesarnie · 02/04/2008 11:39

lgt.how shocking for you!i know nothing about turners but just wanted to say im thinking of you.

NorthernLurker · 02/04/2008 11:44

LGT - have been thinking a lot about you and about how I might feel if I knew now that one of my girls might not be able to carry a child. It is very hard - but this syndrome doesn't mean your daughter won't be a mother. It may be different from how you've pictured - but our lives and our children's lives are full of variety and changes and unexpected corners! They are also full of wonderful gifts. I hope you get all the answers to your questions and that your consultant takes very good care of you all.

wishingchair · 02/04/2008 12:06

Hi - I just wanted to give you a virtual hug and to let you know that it's great you're feeling more positive but that it is completely ok to feel devastated and sad. As someone said you will grieve for the life you thought she was going to have and the fact that we all basically want our children to have a normal, stable, loving childhood and now it'll be a bit different to how you planned. But you'll develop a new state of 'normal', it will still be stable and it will always be loving.

Your dh is right in that it's not like fertility will suddenly be taken away from her, but she will know that side or her is different to some others (no one has fertility guaranteed) but she can plan accordingly. I think freezing your eggs is a great idea ... at least she has that option and her genetic line is your genetic line so there is still a close link there.

Making a list of questions is very sensible and don't be afraid to question their responses and ask for second opinions. When we were faced with a medical crisis with DH, he was far more upfront than I would've been and it does pay off, even if just for your own peace of mind.

Try to take one day at a time. Thinking of you xxx

nailpolish · 02/04/2008 12:11

largeG&T you are such a good mother. i dont know what else to say. chin up xxx

trulymadlydeeply · 02/04/2008 12:16

Such wise advice from all the MNers. Stay strong and keep posting.

xxx

mymatemax · 02/04/2008 12:16

Large g&t, be kind to yourself, give yourself time, you've had some good advice from some wise posters on here.
She is still the same beautiful dd, accept help if offered & take care xx

Buda · 02/04/2008 12:49

Freezing your eggs is a fantastic idea! Something YOU are in control of at a time when you probably feel control has been taken away from you.

I agree with your DH about "her" puberty/femininity as opposed to yours. She will know no different.

Issy - your girls are gorgeous!

ChutneyMary · 02/04/2008 12:58

Thinking of you today LG and T. I think the egg donation idea sounds very encouraging.

paddingtonbear1 · 02/04/2008 13:10

Have just managed to catch up with this thread. I don't have anything else to add, everyone has already said it so well! Except I am also thinking of you {hugs}

flamingtoaster · 02/04/2008 13:12

What a shock and steep learning curve for you all. I have no knowledge to pass on but just wanted to say I was thinking of you.

sarah293 · 02/04/2008 13:18

This reply has been deleted

Message withdrawn

eternalstudent · 02/04/2008 13:20

Just to give you some hope - my sister who has Turners is 5'3", has a degree and is hoping to do her PGCE next year, has a great partner who she has just moved in with, and is a nursery manager. She was told it was unlikely she would get more than 3 GCSE's.

You are going into this with your eyes open, that is the best preparation.

lennygrrr · 02/04/2008 13:21

LG&T: I know (I think) how you feel, last tuesday we were told that our dd2 has Noonan Syndrome, which is very sim to Turner Syndrome.

One thing I have held on to, is that she is exactly the same gorgeous, delicious girl as she was before this name/label was given to us (it's just we know a bit more about her 'wiring'. And somebody said to me, it's like you thought you were going to the Maldives and now you're going to Holland!

Please cat me if you want to, and we can wobble together...

Squirdle · 02/04/2008 13:23

LG&T, I'm still thinking of you. It's mad that someone I haven't met has been in my thoughts all day, but you have been.

There are indeed many wise posters on here and eventually you will be able to read back the ones with encouraging messages about their daughters/sisters/firends with TS and realise that you will be able to deal with it.

I can totally understand the feelings you must have. Your daughter is so precious to you and you don't want her to have this to deal with. But with your help she will grow up to be a fantastic and wonderful young lady, just as she would have done without this.

I can't pretend to know exactly how you are feeling, but I know I have always dreaded the thought that something could be wrong with my children.

You also need to remember how quickly technology and medicine is moving along now. I have no doubts that your little girl will have her own children one day, it will be more difficult for her, but she will. And you will be there with her.

Anyway, I am waffling now (as I have a tendecy to do!) We will meet up one day, it's only a hop down the motorway, as I just have to meet those gorgeous children of yours!

You take it easy. Cry if you need to, it will help. Your head must be full atm!

Take care x

Squirdle · 02/04/2008 13:25

lennygrr, that is a perfect way of putting it! You are just taking a different route in life (I don't mean to sound blaise about it btw, I know it's not as simple as that)

I'm sorry to hear you had to deal with this too.

dejags · 02/04/2008 13:26

I am thinking of you LG&T.

HairyMaclary · 02/04/2008 13:27

Hi LG&T - I haven't got to the top of the thread yet but just wanted to say that it is ok to feel sad, upset and that it is unfair - it is! It is also ok to 'grieve' for the daughter you thought you had and the grandchildren that you may also have thought about! It may take a long time to get over this stage but that is also OK. I don't 'know' you on here but my son has CP and although he is a lovely boy and I love him very much I rail against his CP and the effect it has on his life.

MaryAnnSingleton · 02/04/2008 13:28

Hello - am so sorry that you are going through this - my very good school friend has Turner's Syndrome and is fit and well and a highly regarded academic, doing her PhD - she was always tiny at school and I don't think it was diagnosed until she reached puberty ( or didn't iyswim) - we never really talk about it as it doesn't seem to affect her life in a huge way - she is quite private so doesn't talk about it.

GrapefruitMoon · 02/04/2008 13:30

I had a feeling you would a lot about the fertility thing - knowing how many kids you have you clearly love having them! - and it's natural that you would worry that your dd will miss out on that... but fertility treatment has improved so mush in the last couple of decades, I'm sure it will have advanced even more by the time your dd is old enough to have babies... and as others have said, none of us know what the future holds - I know a couple who have gone through IVF recently because the dh was infertile, not the woman....