Pregnant and undiagnosed but fearful

[Angelbrooke96]

Hello all, I'm hoping you all can give me a little insight on hughes syndrome. My mother was diagnosed many years ago after losing 3 babies. She then had me 12 years later and now I am pregnant! I informed my doctor of my mother's condition, and she said that they would only look into me possibly having it after having recurrent losses. My question is, did you all find this to be hereditary and passed down from family member to family member? Should I be concerned that what happened to her could also happen to me since I am pregnant? I am so fearful, and there is not much insight on this condition. I am almost 20 weeks, and I am having such a hard time enjoying my pregnancy because I am stressing and worrying about this.

[MaryF Administrator]

Hi and welcome, I notice the great reply you have already received off my colleague Lynn, I will also add congratulations. This does run in some families but not every one, I should enjoy your pregnancy, and after that if you are still worrying about it, you can if you doctor won't do the inexpensive tests, perhaps do them privately. It is a shame your GP will not test you, just to put your mind at rest, do have a look through the charity website, and do feel you can ask us more questions. You could also email your GP the charity website, as it may help them with other patients. MaryF

[Angelbrooke96 in reply to MaryF]

How can I recidve the testing privately? My doctor will only test me if I have suffered multiple losses in pregnancy. I informed her of my mothers health problems and she didn't seem concerned.

[Angelbrooke96 in reply to Angelbrooke96]

Recieve

[MaryF Administrator in reply to Angelbrooke96]

Well I am sure some private testing companies will do them, the three tests are listed on the charity website above, you would have to do an internet search. Usually private hospitals will do tests like that. MaryF

[Stella]

Congratulations from me too. Just one word of caution from personal experience. Do make sure your midwives are aware of your family history and make sure that your baby is growing as he/she should be in the later stages of your pregnancy.

Stella

[Angelbrooke96 in reply to Stella]

I have informed my obgyn of my families history and she said they will only do the testing if I have recurring losses, which I cant imagine the heartbreak of experiencing that. So far, the baby is growing right on track!

[Angelbrooke96]

Thank you much! Are most losses due to Hughes syndrome occurring in early pregnancy? I have made it this far and cant imagine losing a baby this far along, it would be heartbreaking! I'm trying to do everything I can to make sure I have a healthy pregnancy. I just wish my doctor would test me for this so I can just know for sure. I have not had any symptoms though!

[Wittycjt]

Congratulations young lady!

You have been given very good information here. I can tell you only from my experience with my son 30 years ago that I developed a very bad headache, had slurred speech, My blood pressure was fine but I was not feeling well because of what I have mentioned. I hadn’t even known/heard of APS/ Hughes disease neither did my docs but they took it very seriously.

I called the doctor at that time and was sent to the emergency department immediatey where I was evaluated, still not told I had Hughes/ APS, they didn’t know what was going on, but after them hearing of my symptoms and evaluating me, no time was wasted and I had an “emergency C- section” at 34 weeks. I have a healthy 30 year old young man now!

My point is this: remind your OB of your concerns and that if you have any signs even if they seem trivial to you or him, you will be calling him up. And want to be taken seriously because of your fears.

I know this doesn’t give you an answer but hopefully it can provide you some comfort. I pray you have a healthy baby👣