Pregnancy

[klr1186]

I'm looking for a little support, I was diagnosed with APS after a stillbirth at 28 weeks in FEB 2018. I am a triple positive for the disease and would really like to have a baby. My significant other and I were trying again to have a baby just last month, I got a positive test and started lovenox injections that day and was taking 81mg aspirin prior everyday. I lost the baby already at 4weeks 5 days. I am just curious as to if i'm missing something.... should I be doing more? Is there any hope for me?

[HollyHeski Administrator]

Hi, sorry for your losses - and yes there is hope.

I am also triple positive but went 20 years (after my children) before I was diagnosed. I lost my 1st baby at 38 weeks, I went on with no help to have two further successful babies, now 27 & 29 years old.

The important thing now for you both is to give your body and minds time to heal.

You also need an APS specialist, who also covers pregnancy - to help guide and support you prior, during and after your next pregnancy.

I'm sure others with similar experiences will share and support you on here soon.

[klr1186 in reply to HollyHeski]

Thank you!

[klr1186]

Thanks! I appreciate everyone’s feedback so far.

[Yllek]

I’m so sorry for your losses. I truly understand.

I had 3 early miscarriages and had no tests for APS (this was 17 years ago). I then fell pregnant again but my daughter didn’t grow well. My placenta failed and she was born by emergency c-section at 29 weeks. She fought so much but died of an infection aged 6 weeks.

I was told I was unlucky!

I was put on aspirin, still no APS diagnosis, and delivered a healthy baby girl a year later. Two years later a healthy son followed again on aspirin only.

Three years later I fell pregnant again but was told aspirin wasn’t required. I had a concealed placental abruption at 33 weeks and came close to losing our daughter but thankfully she survived.

It was only five years later after I had many issues, a spinal cord stroke and several TIAs that I was tested and diagnosed with APS.

So although I have had tragedy and my babies didn’t come easily, I do have three healthy children all without knowing at the time that I have this condition.

Keep hope, it is possible and the fact that you know and will be treated will be helpful. I understand you were treated and still miscarried but that doesn’t mean it will happen every time.

I wish you lots of luck and sticky baby dust! Xxx

[klr1186 in reply to Yllek]

Thank you for sharing your story with me <3

[Lauren2121]

So sorry for your losses. My specialists have advised lovenox right after ovulation, and said if you wait for a positive test it could be too late.

[JessicAZ]

So sorry for your loss mama. I have a tough road, happy ending success story. I actually got an APS diagnosis before TTC because I had an unexplained DVT a few years ago. My primary care doctor at the time chalked it up to hormonal birth control but when I moved, my new doctor encouraged I see a hematologist to get a workup and I tested positive for APS. I saw a high-risk OB, regular OB, and hematologist all before we started trying to make sure I had a good team in place and started taking baby aspirin. They put me on lovenox shots 2X a day (therapeutic dose) from six weeks to birth. I was able to carry him to 25 weeks with no issues, then started to see slower growth and placental insufficiencies. They admitted me to the hospital for monitoring and I managed to keep him in until 29 weeks, 2 days. It was an emergent c-section birth and he was severely growth restricted due to absent and eventually, reverse diastolic blood flow. He only weighed 1lb, 14oz at birth and had a very short cord (born on 2/3/18). He spent two and a half months in the NiCU - but now he's 6 months old and doing amazingly well. It was a tough introduction to parenthood, especially as a first-time mom, but I hope my story gives you some hope. I most likely won't be trying for any more biological babies because I'm scared things will be even tougher the second time around, but am so grateful for my doctor's careful monitoring. Please don't hesitate to reach out if you want to connect or if you have any questions.

[klr1186 in reply to JessicAZ]

Thank you....this whole disease in itself is slightly discouraging. Well more than slight. I’m glad your baby is doing well now, makes me happy to hear there was a positive outcome. My dad almost died from APS, in 2016/2017...he was sick for a while and then finally got diagnosed and spent almost a year in the hospital. When I felt my baby stop moving and was sent to the hospital and told the unfortunate news, I knew it was ASP right off the bat. He was 2lbs....if only I knew sooner. I’m going to my hematologist on Friday, I’m hoping that he agrees to change my dose to 2x, being triple positive I’m thinking that might help....because I don’t know what else to do at this point

[JessicAZ in reply to klr1186]

It's a very scary disease... especially since so many of the possible complications are life-threatening and so many doctors are unfamiliar with it. I was on therapeutic Lovenox (100mls/mg, 2X a day) and still had severe growth restriction, premature birth, and a critical baby. The outcome is positive, but the journey was very difficult.

That said, don't give up hope! No two stories are the same, and sometimes it's a matter of figuring out what works best for you. I honestly was a little blindsided by all the complications because I knew they were a possibility but read so many success stories from other APS moms that I felt like it was a relatively low risk. The day my doctor walked in looking scared, my heart went to my feet.

My best advice is to find a perinatologist you trust and make sure you're being monitored on a regular basis. If it weren't for my high-risk doctor doing dopplers on a bi-weekly basis, I almost certainly would have miscarried at 25 weeks. Instead, I moved into the hospital and was watched like a hawk by amazing doctors and nurses. It was day by day, and sometimes hour by hour.

If you're on the fence about being able to handle the emotional aspects of a complicated pregnancy - especially after loss - I highly recommend talking to a licensed counselor before you embark on the journey. It can be a lonely one - especially if friends around you are having term babies with no complications. I'm seeing someone now to work through some of my anxiety related to a high-risk pregnancy, low birth weight micro preemie, NiCU stay, and lifelong chronic illness, but wish I had started before I got pregnant just in case.

Also - if you have specific questions or want to talk to someone who understands, feel free to send me a private message. Take care of yourself - and much love to you and your SO.

[MaryF Administrator]

Hi and welcome, I notice the great advice you have had already, so sorry for your loss. The main thing is having the right consultant, if in the UK we have a recommended list under pinned posts, and if out of the UK we have on our charity website a full list across the world which will grow over time: ghic.world/

It is very important that your levels of D, B12, folate, ferritin and your thyroid are checked regularly, and all of them need to be at a good level.

MaryF

[KellyInTexas Administrator]

You’ve had lots of stories. I’ll add one more because im a little older.

I’m 49 and was only diagnosed almost two years ago. ( so when having children/ loosing pregnancies I was undiagnosed .)

My husband and I miscarried early in our first pregnancy- tried again and carried our daughter to full term. We then had several miscarriages before 10 weeks . We also had an ectopic rupture. I was carefully monitored with each pregnancy and even had genetic counseling to try to determine cause of miscarriages! We did become pregnant again in 2000 and did very well. Our son was born three weeks early but was 7 lbs and perfectly weighted.

My mother , now understanding situation in retrospect, had APS/ Hughes also. She gave birth to my twin sisters three months prematurely, and my mother had severe preeclampsia with that delivery and had horrific seizures and almost died. My sisters were quite underweight, as well as premature. They somehow pulled through! ( that was in 1950 in rural Texas!)

My mother suffered numerous unexplained DVT/ PE’s and vascular complications ( aortic anyeurysms). She died from these complications at age 66.

I consulted Dr Natasha Jordan At London Bridge Lupus Center and Prof. Hughes joined the consult . He did tell me it was very clear to him my mother also suffered from APS but it had gone undiagnosed. Even as late as 1995 in the top vascular surgical clinical surgeries in the USA- in Houston Texas. Very sad.

[myarabella]

There is absolutely hope for you! I too lost babies (3) one around 22 weeks. It was devastating. Shortly thereafter we began a battery of tests and I tested positive for APS. When I became pregnant again (at 41, I might add) we started the Lovenox injections and low dose baby aspirin until about 32 weeks when we switched to Heparin because it is shorter acting. I had a perfect pregnancy, except I developed type 2 diabetes. My baby (now 12) was super health, except.slightly low birth weight. I didnt have another baby but I know what you have gone through. Don't give up. Be sure your doctor checks for other issues like polycystic ovarian disease, among other things and keep trying. Best of luck to you.