Should I give up? or keep on dreaming ? - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Should I give up? or keep on dreaming ?

LgrPiz profile image
20 Replies

I was diagnosed last 5yrs. Ago with this syndrome,.and I had 3miscarriages already the last pregnancy I have is very painful for me because i had twins an 8weeks old baby in my tummy but suddenly they didn't survive. So I decided to take rest from being pregnant,. It's been 3yrs after that pregnancy I had,. Now my husband and I thinking,. I am ready to get pregnant again with this condition? Or should I accept the fact that I will never had a chance to have my own child?

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LgrPiz profile image
LgrPiz
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20 Replies
Salty profile image
Salty

80-90% of pts with APS have a successful pregnancy with the right treatment. Have you been on heparin AND aspirin?

LgrPiz profile image
LgrPiz in reply toSalty

Yes, I've taken aspirin as my maintenance right now. Now, I have this hesitation to try again coz it's painful when you fail.

daisyd profile image
daisyd

I am so sorry, how awful for you horrible isn't it. As salty says the right treatment is what you need,

Someone will have more information than me, just want to say I am sorry for your losses

LgrPiz profile image
LgrPiz in reply todaisyd

I'm just afraid to try it again

grovet29 profile image
grovet29

I have 4 healthy boys . I was.on lovenox injections twice daily and asprin. Don't give up on Ur dream . With my apls I've had 20 clots and a stroke, while pregnant, no.clots and 4 beautiful.boys . Good luck .

Tammi

LgrPiz profile image
LgrPiz in reply togrovet29

Wow good to hear it from you my dear friend,. Thank you for the encouragement

Hjohnson profile image
Hjohnson

I have had a full term stillborn and 3 miscarriages .. 1 of them @ 4 months .. But I also have 2 boys and a beautiful daughter.. ALL HEALTHY!! Don't give up on your dreams see a specialist and get it done :)

LgrPiz profile image
LgrPiz in reply toHjohnson

Thank you for the words ;)

janekins profile image
janekins

Twenty years ago I was put on heparin and carefully monitored through my pregnancy by my local hospital plus visits to St Thomas’s. My beautiful daughter would not have survived without that treatment and I am so thankful to prof Hughes and his team. She is my most precious gift ever.

So please don't give up. Get the right treatment and your dream could become a reality.

LgrPiz profile image
LgrPiz in reply tojanekins

Thank you for your sweet msg. I will,

I am so sorry to hear of your problems in holding on to your much loved and wanted babies. I was diagnosed after my second baby and was prescribed Heparin injections twice a day during my third pregnancy. I was monitored regularly by mu midwife and the hospital. You must do what you feel is right for you and your family but it is possible. Good luck and sending you hugs. X

LgrPiz profile image
LgrPiz in reply to

Thank you for the kind and sweet msg of you,. I really hope this time God will grant my dreams,. I'm just scared because because every time I get pregnant every 8weeks the baby will not survive

CanaryDiamond10 profile image
CanaryDiamond10 in reply toLgrPiz

I am so very sorry for your multiple losses. I remember that pain. But you must not expect your baby not to survive.

Fully anticipate it's arrival and it's want to come to YOU and your partner. Visualize it. Imagine your every day. Bathing your baby, laughing with your baby. All positive magical miracles God blesses us with when we have the baby. Even though this disease has taken so much away already, I beg you to think positive. Make a conscious effort to think positive. We know so much more medically speaking and I think If you had proper care and positive expectations you will be successful in a full term baby.

Thirty years ago my husband of the day and I were told to adopt. After five years of the finest medical care available in my area. We were told there was nothing wrong with him, but that I could not be expected to carry a child to full term after so many miscarriages. Their answer was to adopt. My Sicilian husband's answer was to divorce. 18 months to divorce and my very first partner had the combination! I was not yet diagnosed with APS. I was only told I could not expect to have children. After five years of practically standing on my head to conceive and retain a healthy child, it seemed to me to simply be up to a higher power. I dwell ed a short time upon the situation and decided to just be happy about it. In my 7th month gestation I was diagnosed with throbophlebitis of the left leg. It was twice the size from thigh top to tip toe and blue grey. They put me on bed rest. My baby was a bonefide 10 month baby born with "little old man syndrome" (a result of being in the womb too long results the same as being in the bath too long; wrinkled skin, etc.) He made it though. With absolutely no medical help, other than the Cesarean section by which his 8 pound, 2 ounce body was delivered. Four years later, along came his sister which we had planned Cesarean - no trauma involved. We were blessed with two very healthy children no intervention from the medical field.

So expect only the best of normal. Only positive thoughts. It's up to a higher power so relax with it.

Prayers and warm wishes.

Canary

LgrPiz profile image
LgrPiz in reply toCanaryDiamond10

@canarydiamond10, you know what when I had miscarriage with my 8weeks old twins I am so depress at that time,. To the point that I am blaming myself,. It takes time before I realize everything happen for a reason,. After 3yrs. I didn't expect something will happen,. I thought only in the movies og in television I will watch but it's happening,. My friend called me up, she told me if I want to adopt a child at 6am in the morning,. So I told her, I don't know,. I ask my husband,. My husband told me , if I want that child,. And I did not answer all I was thinking at that time maybe this is my chance to be a mother, to experience being a parent,. So we went to maternity to visit a newborn child,. The mother of that child is 18yrs old. She don't want the child coz she is so young,. When we had that child he is only 5hrs old. When they handed us. Now that child is 1yr. And 8months old,. Asa he grow up,. I'm still longing for a real child., coz I am afraid that someday that my adopted son will leave me and he look for his parents,. My husband is very supportive to my case,. We want to try this year,. If god given us the chance,. Also through the help of medication and prayers...

Hjohnson profile image
Hjohnson in reply toLgrPiz

Your adopted baby is A REAL CHILD!! Why would you think any different? The baby isn't biologically yours but they are STILL REAL!! I understand the heartbreak of losing a baby in the womb.. I carried my first baby to 4 months had him at home and had to take him to the hospital.. I then carried my daughter full term and she passed away during birth due to blood clots that formed in her ambilical cord.. Ithen over the next 10 years had 2 healthy boys and a healthy girl with help from a specialist and blessings from the LORD.. In between my son and daughter I miscarried another baby .. It is heart wrenching.. But no matter how these precious children come into your family rather it be ADOPTION or NATURAL.. They make you a MOTHER and make your family complete!! Just remember that they ARE REAL TOO!! :)

LgrPiz profile image
LgrPiz in reply toHjohnson

Yes I really love my adopted son as my own,.

seh1962 profile image
seh1962

Hi - don't give up until you've had specialist advice/treatment. I had 10 failed IVF attempts and several miscarriages before finding out I had APS. My 10th and 11th IVF attempts (plus treatment for APS simultaneously) were sucessful. I had a baby girl at 41 and a baby boy at 46. I was scared all through the pregnacies but proper medical support made it possible and both children are fine.

I'm not sure where you're based but I saw George Ndukwe (he's now working in London) and Professor Kilby at Birmingham Women's hospital. I know there's a similar specialist at Liverpool Women's hospital and no doubt several in London. Do your reasearch and get your GP to refer you to someone who can really help.

I know how hard this is and wouldn't want anyone to have to go through this but there is specialist help out there albeit it will be down to you to do the leg work.

Very best of luck

Sue

LgrPiz profile image
LgrPiz in reply toseh1962

,. They are few are studying about this case,. In our city there is only one doctor who studied it,. And it is very expensive,.

Lesley_D profile image
Lesley_D

Hi, I found this quote on not giving up on your dreams :-)

Life is going to find way to test you. At times, you may feel that life is unfair. The urge to quit during these times are the highest but don’t give in. Whatever your dream is, if it’s important to you, then fight for it. Never giving up doesn’t mean you keep doing the wrong things over and over, it means to be smart and figure out the correct actions to take and then taking them until you achieve your dreams - I hope this helps

I had 7 miscarriages and 2 healthy sons - but this was before I was diagnosed - I wish you every luck in your dream of having a child born happy and healthy

Lesley

fourstar profile image
fourstar

Hi,

When I read your story I got such a fright as it was the same for me, except that I was told it was too dangerous for me to be pregnant and I should rather get a surrogate, or adopt. We have not adopted but are safety parents for a child born to a heroin addict.

I too was diagnosed 5 yrs ago with APS and I have had 3 miscarriages. My last pregnancy I was also expecting twins but had a dvt at 14 weeks, and lost the one twin and the second twin was already very small for his weeks. We lost the last child at 16 weeks. It's been 3 yrs since my last pregnancy. I am now 44 yrs old.

Just keep trying, as long as you are able to financially. Nobody can tell you when it's is enough. You will know when/if that day ever comes.

All the best to you and hubby from SA.

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