had my scan today, bad news - Hughes Syndrome A...

Hughes Syndrome APS Forum

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had my scan today, bad news

MStiff profile image
40 Replies

Unfortunately the baby didn't have a heart beat.

I am devastated even though I kind of knew this would happen.

I cannot bear the thought of starting all over again....

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MStiff profile image
MStiff
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40 Replies
Manofmendip profile image
Manofmendip

Hi

I'm so sorry to hear your sad news and am thinking of you.

Dave

Hopingforababy profile image
Hopingforababy

This is very sad news. I do understand how you're feeling and it is possibly the worst feeling in the world. Please message me directly if you'd like some support. APS is a rotten condition for taking away precious babies. Sending lots of hugs xxx

sangje profile image
sangje

O your poor things - Words cant express the feelings but many of us have been there and we will be thinking of you all tonight, please know you will never forget, but the raw feeling will pass . Love and hugs x

MaryF profile image
MaryFAdministrator

I am sending you a very large hug, I am so sorry to hear your news, do you have close family and friends around you, plus support of your GP? You must look after yourself at this very difficult time. Please come on here for support as often as you need to, so many of our members know exactly what you are going through right now, and how you are feeling. MaryFx

suefessey profile image
suefessey

I am so sorry about your very sad news. I know how you are feeling, you will get stronger.people are here for you.xx

SueLovett profile image
SueLovett

So very sad for you. With x

Herbs77 profile image
Herbs77

So so sorry this has happened, please try to be strong and know that I am thinking of you during this awful time. Sending you much love and hugs.

Hayley xxx

swx3 profile image
swx3

This is sad sad news, I'm so sorry for your loss. Sarahx

struggling profile image
struggling

Thinking of you and your baby. Can't imagine what you're feeling.

Fusch profile image
Fusch

I am so sorry. But please don't give up hope. Xx

starships profile image
starships

I am so very very sorry and am sending you lots of love. Xx

glovebox profile image
glovebox

Sending a big hug and love. Many of us here have been through this so please do make contact if you need someone to talk to. Xx

daisyd profile image
daisyd

So sorry for the loss of your baby, thinking and feeling for you xx

jp83 profile image
jp83

Oh no...

Im so sorry, I am well aware of all the plans and dreams and excitement that are snatched away from you when this happens let alone the heartache that it brings. I am so very sorry....

I really hope you do not give up... And I really hope you eventually get your darling baby, as he or she is obviously so very wanted.....please take care of yourself and take advantage of all hugs and kind shoulders available to lean on xxxxxxxxxx

Mollie01 profile image
Mollie01

Oh my heart goes out to you. Love and hugs, Moll xx

SilAM profile image
SilAM

So sorry... Please take care and don't give up.

xxx

Nellennium profile image
Nellennium

I'm so sorry 😢 please hold on to hope xx

jessie68 profile image
jessie68

Bless you my heart goes out to you, Big Hugs x

Sending you heartfelt love and sympathy on your loss. Thinking of you and sending big hugs. Hope you have a strong support there for you.

Much love

GinaD profile image
GinaD

I'm so sorry.

ronarr profile image
ronarr

sorry for your loss i myself suffered this horrible feeling twice but i wont give up hope because it is worth waiting for

tobiasm profile image
tobiasm

Sorry to hear that, Sending good vibes your way 💗

Brenig63 profile image
Brenig63

So sorry to hear your sad news. Its so heartbreaking. I lost my daughter at 27 weeks of pregnancy due to growth restriction. I know its hard but don't give up and eventually you will have your little bundle of joy I am sure. xx

Sandrapanda profile image
Sandrapanda

I am so very sorry for your loss. I know the pain well, and you just need to allow yourself to grieve, and then decide what is right for you moving forward. After my MC I am still struggling with the decision of whether I can take going through it again with the risk of loss being so high. I am older, and the risks and worry now seem too much to bear for me. Only you can know what is right for you in your heart, and the rest will be up to God to determine how he will choose to make you a parent. Just know that if you want a child badly enough, you will have one...one way or another. Take comfort in that if it helps. Be very kind to yourself over the next few months and get your emotional and physical strength back to where you need it to be. (Hugs and prayers sent your way!)

merrohawk83 profile image
merrohawk83

xxx

Sal0712 profile image
Sal0712

So sorry to hear your sad news. Thinking of you at this difficult time. 👼🏼 A new angel is watching over you! RIP little one xx

peterm profile image
peterm

So sorry to hear your sad news, You are in my thoughts an prayers.

Peter

I'm truly so sorry - words can't explain I know x

mylafont profile image
mylafont

Prayers and Hugs.

RockabillySoul profile image
RockabillySoul

I'm so sorry. Don't give up. My husband and I had 7 miscarriages before we were blessed with out 2 beautiful boys. Ask about taking shots of lovenox during pregnancy. It helped me carry to term. My thoughts and prayers are with you.

Aphunt profile image
Aphunt in reply to RockabillySoul

I also took lovenox every day and was able to have healthy baby after 2 miscarriages. Rockabilly soul, did you have preeclampsia?

RockabillySoul profile image
RockabillySoul in reply to Aphunt

No I didnt have preeclampsia but I did have placenta pre via

Sev132 profile image
Sev132

In so sorry for your loss :(

I have been in your position three times in the first trimester and my last pregnancy lasted til 21 weeks when baby's heart stopped...I have recently started seeing a reproductive immunologist (I'm in Australia) who specialises in helping women with autoimmune conditions carry full term using a range of treatments. There are quite a few reproductive immunologists around the world...maybe look into it?

This is a horrible condition and it sucks that something that should be so natural, is so bloody hard for us!

Thinking of you and sending you virtual hugs xx

molly1969 profile image
molly1969

I'm so sorry for you. Just to let you know we're all thinking of you. Cheryl x

MStiff profile image
MStiff

Hi All,

Thanks so much for your responses. I cannot respond individually to all of them but they have helped me immensely.

We are still in Cape Town because when I went for my follow up after D&C they still saw remaining tissue. I took pills to try to see if it would expel the remains but it hasn't really worked so she is going to give me more on Sunday and then re-scan me. If nothing has changed, I have to have a second D&C.

This sucks on so many levels- obviously I do not want to have surgery again for obvious reasons. Also my sister was meeting us in Joburg to visit from NY city, so she is now home while we are still here...and also we have our business to run and my husband didn't want to leave me, so we are both not working and spending more and more money here. I know those things are not important but they are still taking a toll.

For those who have taken Lovenox, what is the difference in doing that versus Clexane and aspirin? I didn't do aspirin last time but doctor wants me to do it on this one.

I was also on progesterone- would this have any negative effect with APS?

Is there the possibility that my body is rejecting the baby due to seeing it as a an "invader"? If so, aren't steroids often recommended?

They are also doing chromosomal testing because they said that usually 80% of miscarriages are caused by chromosomal abnormalities but not due to there being anything wrong with the parents chromosomes, it just bad luck that could happen to anyone. Obviously we are hoping that's what it is because then at least it means that the blood thinning injections were doing their job and it is was just an unfortunate thing. My rheumatologist will not say APS causes the m/c because she says they happen in later pregnancy but based on everything I have read, APS can also cause early m/c so I am a bit confused.

All in all, I am still very glad I am in Cape Town for this because obviously they wouldn’t be able to do the testing in Malawi and also the level of care here is outstanding- just want to put this past me and move on!

MStiff profile image
MStiff

so Lovenox is the same as Clexane I believe...

Lure2 profile image
Lure2 in reply to MStiff

First of all I also say that I am sorry for your loss but happy that your care in Cape Town is outstanding!

i have learnt that Lovenox and Clexane is the same thing.

I love to hear that you want to move on! I wish you GOOD LUCK here from Stockholm!!

Kindest regards from Kerstin

Hopingforababy profile image
Hopingforababy

Sorry to hear of all the complications. The last thing you need. APS causes early miscarriage for definite and in my case it caused infertility. The pregnancies were not implanting properly because clots and poor blood flow to the uterus. My haemotologist at Cambridge University hospital says that he prescribes Clexane for women trying to conceive with APS as clexane allows successful Implantation which is key to the final outcome. With clexane when trying to conceive I fell pregnant straight away and had a totally normal pregnancy - my daughter grew at a normal rate and the blood flow through the placenta was perfect. I wasn't on anything else apart from high level folic acid as this also helps the developing placenta. Don't give up. Arm yourself with as much knowledge as possible and get the right obstetrician x

MStiff profile image
MStiff

Thanks for this- very helpful and positive. So did you use clexane PRIOR to conceiving as well? xx

Hopingforababy profile image
Hopingforababy

Yes - just for the week running up to conception x

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