Eluf . I am so pleased to read your post and hear your relief . Her problems can be overcome and with your love she will thrive . Love is what matters to a child , its what they thrive on and so too will your special little girl
Just wanted to add my best wishes to this. I am happy to hear that you are more positive now you have a bit more information. She will get through whatever she needs to with your love and help.
I've followed this thread and am so very relieved for you, I haven't really commented because it's such a personal experience and I didn't want the pertinent replies to get lost in a flood.
What I will say now, is that it's fine to be perfectly honest with yourself and others, a very close friend of mine found out her son was Down Syndrome during her pregnancy, it never once crossed her mind not to continue her pregnancy, but what she felt (and never talked about till long after) was that she felt like she'd suffered a bereavement, this perfect child that she imagined didn't exist. Her son of course is perfect, just in a different way, she felt guilt and couldn't talk about it at the time, but she says now that she wishes that she had, just to get it off her chest.
I hope you understand what I'm trying to say, and I hope that my well intentioned comments aren't misunderstood.
I've followed this thread and am so very relieved for you, I haven't really commented because it's such a personal experience and I didn't want the pertinent replies to get lost in a flood.
What I will say now, is that it's fine to be perfectly honest with yourself and others, a very close friend of mine found out her son was Down Syndrome during her pregnancy, it never once crossed her mind not to continue her pregnancy, but what she felt (and never talked about till long after) was that she felt like she'd suffered a bereavement, this perfect child that she imagined didn't exist. Her son of course is perfect, just in a different way, she felt guilt and couldn't talk about it at the time, but she says now that she wishes that she had, just to get it off her chest.
I hope you understand what I'm trying to say, and I hope that my well intentioned comments aren't misunderstood.
I can totally understand where you are coming from, having a child with disabilities...
I really recommend reading this, I found it lovely and as the years have gone on really relate to it at times x
Eluf, there are support groups online for parents with children with disabilities, Contact A Family, and Steps.org being just two. I wish you and your husband the very best, and thank goodness you have some information to work with now.
So pleased for your update OP.
I don't have fibula's either, and my ankles have had to be rebuilt several times, i also don't have any movement in mu toes and very limited in my feet. And for my own child i had a cvs to see if he had inherited my condition or another that i am a carrier of. If you want to message me to ask anything i am happy for you to do that xx
I've had a bit of a miserable day today, but reading your update just now has made it so much better - really delighted that you've finally had some positive news!
So glad the news was mostly positive, your baby is perfect in every way, she just has a problem with her legs which I' m sure can be helped. Good luck to you and your partner, I really am wishing you all the best and please keep us posted as your pregnancy continues.xx
Only just seen this, love, and pleased for you that the situation is not as bad as you feared and made up you're expecting a little girl! I spect you'll get extra scans as you both progress, now, which is a good thing and will hopefully be reassuring. Can't believe they made you wait like that. You're going to be such a great mum. x
Didn't sleep too well last night. Considering going back to bed and seeing if I can get an extra hour's rest before we go to see the consultant.
Yesterday evening was spent reading blogs and online support groups for the condition we think our baby has. For a few seconds it all seems horribly daunting, and I can picture lots of times when I will cry and struggle to cope. It's not what any parent would want for their child. Then I think of pictures I've seen on blogs, and realise that the condition is not life-threatening and may not even be that disabling in the long term; and that for every anxious hospital appointment there will be whole weeks of trips out and fun days together.
I don't feel as though I've 'lost' something I should have had. I'm not grieveing for the child we might have had, with two working legs and a 'normal' life ahead of them. Honestly, I'm not - simply because while we were waiting for that second scan I'd envisioned having to say goodbye to her; so on the contrary, it feels as though she's been restored to us.
I'm not worried for myself. I'm worried for her and the difficulties she may face. But at least I can do something positive to help her overcome any problems she may have. Our attitude as parents has to be that she is our amazing little miracle, and she doesn't ever have to be perfect, because we will love her exactly the way she is. Considering I was a hysterical wreck this time last week, I'm quite proud of how I'm coping with this. Mum said last night that we were both being very brave. In the same situation both she and my sister have said they would really struggle to cope (meaning that they would consider a medical termination). It's easy for them to say that, as they both have two healthy children each. Our little girl is our first and may be our only, and as long as the consultant says she her condition is 'compatible with life' then we will give her the best damn life she can possibly have.
The thought of the amnio is making me rather nervous - I hate needles, but more than that, the risk of miscarriage frightens me. Today I really, really want some more good news - that her organs look fine and her development is good; that this is an isolated and non-genetic disorder. If having the amnio will confirm that, then it's something I'll have to do. Fingers crossed.
Back from the hospital. First thing the consultant said was 'I'm no expert, I want to send you to Liverpool for further tests.' Argh! We were originally referred to Liverpool, only to be bounced back to Wales because their waiting list was too long! We have now been re-referred and are waiting for an appointment.
He did a scan today, which revealed very little we didn't already know: no fibia, shortened tibia on both legs. The only positive thing was that he confirmed Sunday's scan as accurate and also said that the chest and head (which could be indicators of problems if mishapen) are both normal size and shape. He was very careful not to suggest what could be wrong, saying there is a 'long list of things to rule out', but at the end he did say that if the problem is purely skeletal, it can be treated.
I'm going back to work tomorrow. I feel ready to go back to the office, and it's probably mentally healthier than being stuck at home, worrying. There's nothing that we can do other than wait, so trying to return to normality is the best option.
We're going to try and avoid dissecting the results and diagnosing via the internet, and be hopeful that 'no news is good news.' Fingers crossed she remains a healthy little girl from the knees up.
Eluf . Having worked all my life with kids with disabilites I would just like to say they are amazingly accepting and incredibly adaptable
So too will your little girl and she will show you the way and teach you how to cope.
Information will arm you with courage and love will arm your baby with all that she needs
Comments
X
If they offer an amnio I would ask about having the CVS instead... there are still very slight risks associated but less than the amnio.
If finances allow you may want to look at something called the Harmony test.
http://www.fetal-medicine.co.uk/pregnancy-scans-kent/harmony-prenatal-test/?gclid=CLyx8pv8pb4CFZYSjgodg3wAag
I am not entirely sure the Harmony test is applicable BUT I thought I'd mention it.
Best of luck tomorrow
X
What I will say now, is that it's fine to be perfectly honest with yourself and others, a very close friend of mine found out her son was Down Syndrome during her pregnancy, it never once crossed her mind not to continue her pregnancy, but what she felt (and never talked about till long after) was that she felt like she'd suffered a bereavement, this perfect child that she imagined didn't exist. Her son of course is perfect, just in a different way, she felt guilt and couldn't talk about it at the time, but she says now that she wishes that she had, just to get it off her chest.
I hope you understand what I'm trying to say, and I hope that my well intentioned comments aren't misunderstood.
I can totally understand where you are coming from, having a child with disabilities...
I really recommend reading this, I found it lovely and as the years have gone on really relate to it at times x
Always happy to talk xxx
http://www.our-kids.org/archives/Holland.html
Some disabilities are non compatible with life, we must remember that!
Thankfully it looks like Eluf's little lady isn't in this category.
There's also a Facebook page "shut up about your perfect kids" which injects a little bittersweet humour.
For bone problems there are many surgical options that may be applicable in your case.
Haha I hadn't heard of that one, I'll look it up!
Take care.
I don't have fibula's either, and my ankles have had to be rebuilt several times, i also don't have any movement in mu toes and very limited in my feet. And for my own child i had a cvs to see if he had inherited my condition or another that i am a carrier of. If you want to message me to ask anything i am happy for you to do that xx
Yesterday evening was spent reading blogs and online support groups for the condition we think our baby has. For a few seconds it all seems horribly daunting, and I can picture lots of times when I will cry and struggle to cope. It's not what any parent would want for their child. Then I think of pictures I've seen on blogs, and realise that the condition is not life-threatening and may not even be that disabling in the long term; and that for every anxious hospital appointment there will be whole weeks of trips out and fun days together.
I don't feel as though I've 'lost' something I should have had. I'm not grieveing for the child we might have had, with two working legs and a 'normal' life ahead of them. Honestly, I'm not - simply because while we were waiting for that second scan I'd envisioned having to say goodbye to her; so on the contrary, it feels as though she's been restored to us.
I'm not worried for myself. I'm worried for her and the difficulties she may face. But at least I can do something positive to help her overcome any problems she may have. Our attitude as parents has to be that she is our amazing little miracle, and she doesn't ever have to be perfect, because we will love her exactly the way she is. Considering I was a hysterical wreck this time last week, I'm quite proud of how I'm coping with this. Mum said last night that we were both being very brave. In the same situation both she and my sister have said they would really struggle to cope (meaning that they would consider a medical termination). It's easy for them to say that, as they both have two healthy children each. Our little girl is our first and may be our only, and as long as the consultant says she her condition is 'compatible with life' then we will give her the best damn life she can possibly have.
The thought of the amnio is making me rather nervous - I hate needles, but more than that, the risk of miscarriage frightens me. Today I really, really want some more good news - that her organs look fine and her development is good; that this is an isolated and non-genetic disorder. If having the amnio will confirm that, then it's something I'll have to do. Fingers crossed.
He did a scan today, which revealed very little we didn't already know: no fibia, shortened tibia on both legs. The only positive thing was that he confirmed Sunday's scan as accurate and also said that the chest and head (which could be indicators of problems if mishapen) are both normal size and shape. He was very careful not to suggest what could be wrong, saying there is a 'long list of things to rule out', but at the end he did say that if the problem is purely skeletal, it can be treated.
I'm going back to work tomorrow. I feel ready to go back to the office, and it's probably mentally healthier than being stuck at home, worrying. There's nothing that we can do other than wait, so trying to return to normality is the best option.
We're going to try and avoid dissecting the results and diagnosing via the internet, and be hopeful that 'no news is good news.' Fingers crossed she remains a healthy little girl from the knees up.
Going back to work is a good idea - it'll take your mind off things. Do your workmates know the situation?
Take care of yourself, I wish you strength and love for the future.
So too will your little girl and she will show you the way and teach you how to cope.
Information will arm you with courage and love will arm your baby with all that she needs