Is there a link between APS & having a baby born with a heart condition?

[Nccarolina]

My daughter was born with tetralogy of fallot ( narrowing of the pulmonary artery). I had her after 5 miscarriages. After she was born & four miscarriages later, I was diagnosed with an elevation of antibodies. With my son I was on heparin & baby aspirin. I am in the process of finding out if this elevation of antibodies is APS/Hughes. Does anyone know if congenital heart defects are associated with Hughes?

[MaryF Administrator]

Hello, yes there can be, it is common in some families, ie I have APS, and my duaghter has a very narrow artery and also had a small hole in her heart which has now closed. Miscarries are a common feature of hughes, it is amongst the long list of symptoms. I am hoping you have a rheumatloglist/heamatologist who is helping you. I am seronegative, so fail the tests but have had clinical incidents. Welcome by the way. Mary F x

[Nccarolina in reply to MaryF]

Hi Mary,

About 20 years ago I had 2 different high risk dr (endocrinologist /infertility) tell me I had an "elevation of antibodies" & I point blank asked if there were any health problems I was going to have down the road. I was told the health problems would have occurred in my 20's. By this time I was 32. I had my second child with the help of heparin & baby aspirin & have continued on with life.I was under the impression the antibodies got rid of foreign objects in my body, so when my body rejected an IUD after 2 years, I just did not have another one plus the pain of passing it was worse than having a baby or a miscarriage. Ten years ago, I started feeling very tired, got high blood pressure, & irregular heart rates. With the high blood pressure I can experience "white vision," dizziness & had a bad fall before I was diagnosed. With the heart rates, I get out of breath with a hyperventilion feeling. I take meds for both. At one point my blood pressure was so out of control, I had gastric bypass surgery to lose weight & now my BP is under control with fewer meds. Now I am hypoglycemic & my vision fluctuates & sometimes I get short dizzy spells. I have had carpul tunnel surgery, one bout with vertigo, unexplained severe sharp pains in my side & stomach. A year ago I had a 3 level fusion in my lower back to correct a slipped disc, herinated discs, bulging discs & thinning of the spine. I still have pain in my back, knees & legs, but not as severe. The brain fog has become very evident since my back surgery. The pain & tiredness has been enormous the past year. I have tingling & coldness in my hands & feet with whole body chills that I thought was due to my back, but am still having it. All my life I have had to watch my speech to slow it down so my words don't get muddled. When I was 6, I started having boils--10-12 at a time-those have gotten better with age. My first knowledge of a name or symptoms to this antibody problem was 3 months ago when I found this website by accident. Now, I am working on getting to see Dr. Ortel at Duke. I have joined a study he is doing about trying to find a genetic link for APS. They are gathering my medical records & they are going to let me know if I have APS. For an appointment with him, I have to have a referral. That should not be a problem with my back surgeon at my June appointment. He has been concerned about my pain. I am trying to get my son tested & referred because he has chronic migraines. Well, believe it or not this the short version of my story. Can't believe my daughter's heart condition could be caused by this too. Thanks for the info.

[MaryF Administrator in reply to Nccarolina]

Well done for writing this, it helps others as well as yourself, and with all the tests going on, do make sure they test your thyroid, as many of us with APS end up with that. My son too has chronic migraines and also my daughter! Mary F x

[Nccarolina in reply to MaryF]

Hi Mary,

Yes, I saw your post about the thyroid antibodies with the video. Thank you!

Also, I forget to mention I have had one episode of a kidney stone & 2 ovarion cysts that ruptured. The cysts were after my last miscarriage. All very painful stuff. I will let you know what I find out with the study. I am going to get to the bottom of it and find out what kind of antibody problem I have. Can't believe no doctor has ever suggested I see a specialist with all the symptoms I have. For the past 10 years I have like I was going to live a short life with all the things going wrong. An APS diagnosis would explain everything.

[bernieembleton]

Hi my daughter was born with Wolfe Parkinson White Syndrome, which is an heart condition, This was not detected until she was nine, after she kept collapsing. When i saw Prof Hughes, he did say there may be a link. She has just recently had to have an operation cancelled, has her heart rate fell to 40 bpm and they had dificulty raising it back up in the theatre. Hence she has to go back to the cardiologist now. She is in her thirties. I have cardiac sydrome X.

[Nccarolina in reply to bernieembleton]

Thank you for your information. I looked up your heart condition and it is very interesting as my father had angina. Several years ago the doctors saw signs of it in me on a stress test, but when the did a CT scan I did not have it. I was so concerned about it that I got a second opinion. Were you a blue baby? My dad was a blue baby when he was born, so I think he must have had a congenital heart defect, too.

Did you have a lot of miscarriages, too? I had 10 and now have 2 children. I'm glad I kept trying because my two children have been worth everything I went through.

[jessielou]

Hi hon

Yes I believe so, my eldest daughter was born a little blue and on testing had a problem a nervous year followed waiting to see if hole would close, thank goodness it did.

I really hope they get to the bottom of your symptoms and find some answers and treatments that help.

I too have had the ovarian cysts and degenerative disc disease, brain fog is a constant pain, although do try to laugh about the silly talk that just wanders out of my mouth as if my brain is not attached to it. I had 8 miscarriages, but am blessed with my 3 miracle children and a brilliant stepson, who all get mum!!!

Ask away hon if we can help we will.

Take care gentle hugs love Sheena xxxxxx

[Nccarolina in reply to jessielou]

My daughter had 3 surgeries to correct her heart problem. She is now 24 and will have another surgery in her mid 30's so it has been a lifetime of getting it fixed. She was not able to do althetics, but took dance 16 years and in college was on a dance team for a year. She is now teaching school. So, she doesn't let it stop her!

[Nccarolina in reply to jessielou]

Yes, this website has helped me. I have been reading for three months with my mouth open, saying, I've had that. At least, I now know that I'm not falling apart, just having symptoms. Liza

[jessielou]

Hi liza

glad to know we helping. Your daughter sounds like an amazing person and an inspiration. My big girl has had a few flutters over the years, but she sings like an angel, also did dance and runs her own restaurant. Tough cookies us hughies and our families.

Lots of us to have thought we going crackers, I felt so relieved when got diagnosed, at least I have my reason.

Take care gentle hugs love sheena xxxxxx

[Nccarolina in reply to jessielou]

Yes,my daughter is tough that goes back before she was born. The doctor's told me that somehow she over rode the antibodies. I'm sure your daughter was the same since she is in her 30's.

[purple]

This is interesting. Although I dont know if my mum had aps. I have the diagnosis (from Prof Hughes, though not my local doctor) and I have congenital heart disease with a heart structure that is a mystery to all the cardiologists, including having holes.

[pumpkincake]

We did not know until age 12, but my daughter had heart issues and had to have an ablation to resolve the problem. She became very short of breath and after testing they found she was having an extra (on average) 43,000 beats of her heart a day. It came out of nowhere when she was trying out for track. We could have lost her...thankfully the heart specialist was the best!

I dont know if it is related to APS but who knows.

At one point an echocardiogram showed I had borderline aortic aneurysm. Funny thing is I was never told about it. That was in 2004 and I just read it in my medical records last month. DOCTORS !