got pathology results back *app now on mon*

[babydust]

just an update on how i am, firstly thanks for everyones support it really does meen alot to me.
Dh took the day off work today we had a nice relaxing morning , took the girls to nursery then went out for a mexican lunch, it was really good just being the two of us, i really dont feel as bad as i did yesterday, we decided not to get stressed out trying to see the consultant sooner, we thought it would give us time to research things ourselves b4 we go and see her and to be honest what we have seen so far confirms to us that we did the right thing, the mortality rate of a cystic hygroma as large as it was is 80-90% not to mention the heart defect, so i really think it was the best thing to do, yes it was a shock that he didnt have any chromosome problems but looking into it again i think he was a very sick baby that would not have made it.

 

Clare,

I was wondering how you were and then I saw this - I can't believe it. I remember urging you at the time, when you first posted that there might be a problem, not to rush into a termination (to wait for the results and get the full facts), but I understand that women who get news like this react in shock and believe that they are acting for the best in ending the pregnancy as soon as possible.

You must be feeling a terrible mixture of emotions, including anger and guilt. Finding out that your baby was a boy (which would no doubt have been extra special after 2 girls) must have been doubly hard. Although it's natural for you to feel angry at how the information was presented to you at the time, try not to feel too guilty about your decision to end your pregnancy. There's a reason why the saying is, "WITH THE BENEFIT of hindsight' - remember that you didn't have that benefit when you were placed in that awful situation: you did what you thought was right for you and your family at the time, based on the information you were given.

It's terribly sad that you've now discovered that your baby boy was perfectly normal after all, but most people put blind faith in doctors' opinions, without ever stopping to question them, so don't blame yourself. Doctors are just people at their work. Contrary to what most people think, medicine is NOT an exact science and - as I've already said - scans and blood tests etc. are NOT diagnostic tools for chromosomal abnormalities: only the more invasive tests (for which you have to wait) can tell you conclusively whether your child will have a disorder such as Down's, Patau's, Edwards' etc. A doctor cannot give such a definite diagnosis by scan (or else there would have been no need for such invasive tests to have been invented).

I hope that you can get through this, Clare. I know it's been a terrible time for you since you lost your baby and this must be a terrible blow, but nothing can be undone or changed now. Just try and be kind to yourself.

I'm thinking about you.

Love,

Wendy
xxxx
P.S. just read your update and I'm glad that you're taking time to be alone with your partner and that you've now found out some more information that has reassured you about your decision. All the best xxx

 

[babydust]

my appointment to see the consultant has now been brought forward to monday at 12.30, im soo glad so we can finally get some answers and put this to rest.

 

[poppy160]

Awww, I hope it all goes okay for you. I can't believe what you've been through

 

[katyk]

Oh I'm glad your appointment has been brought forward and hope they will say something that helps you a little

 

[lisa&alex]

hi claire, i cant tell you how much i feel for you and your family, and i dont think saying sorry is ever really enough..
ive been checking on your posts to see how everything is going with you guys, i hope seeing the consultant puts your minds at ease, you have been through such an ordeal.

i just wanted to say that its ok to cry, and to feel sad, dont beat yourself up about it hun. hope you are ok.. xx thinking about you.

 

[Squiglet]

I just wanted to say.... That with my past history... If my doctor had told me during my first tri, that my baby had a heart problem and cystic hygroma, and that it was probably Edwards, I would have had a termination too, for all the same reasons that you have mentioned. You made the right choice based on the information you had. You did the right thing by your daughters... My sister died from Edwards when I was little and it affected me deeply for the rest of my life. I know I couldn't put my daughter through the same which is why I would have made exactly the same choice as you.

There was no fault on your side. Your doctors should have offered you more testing, been more patient. They know their "diagnoses" aren't perfect. I think you should write a formal complaint.

I think spending some time alone with your husband is also a great healer. You will be each other's rock... let this time strengthen your relationship, as these things often do.

I just wanted to give you and your family lots of these

And please remember what a wonderful person you are.

 

[babydust]

thanks

"I think you should write a formal complaint. "

I haven't made my mind up yet about this i think i will wait till we see the consultant and see what she says, me and dh are going to write everything down b4 we go incase we get upset or forget, Dh's friend is a lawyer and offered to come but i think we will go alone first, i just feel this situation is bad enough i dont know if we should pursue anything or put it to rest i will see how it goes on monday.
I wasnt sure what people would think of me here for having the termination, im sure there are a few that dont agree but you really dont know what you would do untill in that situation, and i still think that i made the right decision.
Thanks for your reply squiglet if you dont mind me asking how old were you when your sister died? our two girls were a big factor in the decision we made and they find it hard enough understanding that the baby has gone, just now there isnt a day goes by that they dont mention the baby, i just wondered if they will remember this or if they are too young

 

[Squiglet]

I was 3 when she was born... 4 when she died (she died four days after my birthday, I was born the 17/06 she died 21/06)...

Everyone said I was too young to remember....but I can clearly remember what happened. I know she wasn't home for long. She died at home and I remember when my mum found her... My mum always told me I couldn't have, but I have since recounted the experience of that day to her, and she just started crying....

You might not remember much as a child, but death is such a huge event that it marks you for life, and unless you are very tiny you will remember it. My daughter remembers when my ex beat me up and smashed all her toys when she was just two... Traumatic memories stick. Problem is, you can't explain death to a 4 year old in anyway than, that person is never coming home, ever...and you will never see them again... That's really difficult for a kid to deal with. My mums catholic.. So it was dressed up with clouds and stars and angels... but the way I saw it was that the ambulance had stolen my sister!

I don't know how old your daughter's are but if they are a similar age to what I was, they would have remembered.

I asked my mum (cos I was worried this baby might have Edwards, i didn't know what to do) and she said that if she had known then, what she knows now, she would have had a termination. But the tests just weren't available back then, this was 25 years ago.

You're right... No one understands until they have been in that situation. I just know I would have made the same decision as you... and I'm pretty sure that a lot of people faced with the same possibilities, would have too...

Defiantly write everything down... I can only imagine that you would be extremely distraught over this. I hope it goes well for you...

 

[babydust]

sounds like your family have been through soo much
My little girls are 3 and 4 yrs, but i am greatful in a way that i didnt put them through it, i think they will remember me being pregnant and the baby dying but although they ask every day where the baby is now hopefully it wont be such a bad memory when they are older and some day they will have their brother or sister they have been looking forward to.

 

[katyk]

Hi Claire just to say that I think I would have made the same decision as you. Some people might be strong enough to cope with carrying on the pregnancy etc, but I wouldn't have been.

You saved that baby more pain, your other kids, and you and your OH too. It's 'good' in a way that it was detected so early.

I think the severity of the heart problems will be explained to you tomorrow, yes doctors do make mistakes but it would be rare for them to make one this major, and they would tend to err on the side of caution.

I hope that tomorrow your mind is put at rest a little

If it does still seem like they advised you wrongly, you can think about what to do when you know one way or another. But for the moment just concentrate on getting through tomorrow and finding out more.

 

[fynemum]

Some hugs for your appointment and I hope you get some reassurance and answers tomorrow

I know several woman, some on here who have had to make that choice, later in pregnancy..... but really it is no choice in 'my opinion'

You are a very brave wonderful mum, I personally feel the heart ache you and dh are going through now, could not have be prevented. We all base our actions on the information we are given, I hope and pray that your healing process is a speedy one.

please be kind to yourselves and give yourselves time too, Love and hugs Yvonne xx

 

[katyk]

hope your appointment today goes as ok as is possible claire

 

[Squiglet]

best wishes for today...

 

[Kimberly]

Thinking about you today.

 

[poppy160]

Hope everything goes okay for today Claire

 

[babydust]

well it went ok today i didnt really get any answers as to why this happened i was told it was just bad luck, we were reasurred though that we made the right choice the consultant said that it wouldnt have made a difference if the testing came back with an abnormality the baby had a large cystic hygroma and wouldnt have had a good outcome so we accepted this. we also found out that the loss we had in january was a boy too so now we are wondering if all my losses have been boys and if this is the reason for it going wrong, i have heard of this b4 i just wondered if anyone knows anything about this, when we put this to the consultant she didnt seem to think this was the case but didnt offer any testing for it, she said it is very unlikely and they would have to test that specific gene, she said that this gene wasnt tested i also told my mum and she told me she had a m/c early on b4 she had me and it was a boy, she also has 2 girls so i know im clutching at straws here but i think i will really i will push for this test.
I was also shocked to find out that i have never been tested for antiphospholipid (a clotting disorder)so we got that tested today the results will take 6 weeks.
if the results of this are positive then they can give me blood thining medication and if they are negative i can go on a trial which they are doing it involves taking heprin and asprin every day of my next pregnancy and getting weekly scans up to 36 weeks. so i told then i would look into it and let them know, has anyone heard of this?
Sorry about the length of this post but i wanted to get everything in.

 

[lisa&alex]

claire im so glad you have come out of this in a positive frame of mind! i know a mum (who is a twin) who had a lot of miscarriages, she only ever carried 2 girls to term (1 perm) and all her other babies were boys, her brothers only ever fathered boys (3) and the womans daughter cant carry girls...her daughters had 4 kids all boys..

i think its definatly worth looking into xxx

 

[katyk]

Glad you were reassured a bit claire, nag them and maybe you can get more answers/ideas

 

[fynemum]

Claire,
I know you didn't get all the answers you were looking for, but i am very happy to see you are in such a positive frame of mind, looking to the future good for you. Keep asking your doctors for explanations and if they can't tell you, make them find out and get back to you.

I am afraid I am a bit like you, I have heard of people not being able to carry a boy or girl...... but to be honest I don't know how much scientific truth there is in that? My aunt lost 3 boys but had 2 girls without any problems... the boys where all almost full term placenta failure....... so ? ? ? i don't know.

I hope you get answers and I shall be watching this post to see if Anyone can shed some light of that theory.....

Good luck sweetheart... you deserve it.... take care too and remember to give yourself time and kindness.
lv Yvonne x