Sadness and loss, could use some advice about baby loss, APS and what treatment you used to get to a healthy baby.

[carterandamelia]

Backstory, I was diagnosed with APS when I was 21 years old, at that time they said it was Lupus Anticoagulant, but have since amended that I have the classical symptoms of APS.

In May 2013, my sweet baby boy Carter was born at 27 weeks and 5 days stillborn. At this time I was on a 80/mg of lovenox but not being monitored via the blood test to monitor lovenox and baby. Needless to say there were tons of clots in the placenta. Eventually with my weight and the baby we were not theraputic, and he passed. I also was on Prenatals.

Now, Jan 7th, 2015 (a few days ago) I was 17 weeks and 2 days pregnant. I was in the hospital twice that week, earlier for cramping and a clot that came out (small like a nickel) they diagnosed me with Bacterial Vaginosis and an inflammed cervix that they could put their finger tip into but the inner cervix was still closed. They seemed okay with that and scheduled an ultrasound the next week for (3 days later to measure the cervix). Baby's heart beat was good.

Then I called the next day cause my cramping was worse, and I was spotting more they said it was normal given what was happening. The next day (the 6th) I called because i was having very frequent and extremely painful cramping still with spotting. They said to come in so they could figure out what was causing the pain. I went in and the nurse said she could feel membrane when she pressed into the cervix, again baby's heart was beating no problem. I was admitted that night, and an ultrasound showed bleeding in the uterus, and a short cervix. They gave me labor stopping medication and said that sometimes the meds don't work, which they did for me. The next day (the 7th) I had that ultrasound scheduled so I went to it. Baby was so happy in there moving around, with a great heartbeat we also found out that we were having a girl! They told me that it looked like I had a small placental abruption, and showed me where blood was pooling up in the uterus. It was a long day of waiting but the doctor said that some people can have a placental abruption and make it to full term so some hope was still there, we just didn't know what would happen, they also wanted me to use progesterone vaginally to help with my cervix. That night my husband went home for a few hours, and luckily he came back about half and hour before I gave birth. I was cramping rhymically but I didn't realize it, I wrote it down. She was born at 9:25 pm to just me in the bathroom. I felt the water break and seconds later I was holding her. She was alive and moving her arms and legs. She lived for an hour and 12 minutes. They doctors and nurses were shocked that she lived that long. I was severely losing blood (full uterus, gushing amounts every few minutes) but I refused to leave my little Amelia Rose while she was still alive. I wanted her to pass away with both of her parents with her, and she did. I had most of a D&C (cause I was already dilated) which was really difficult to leave her, and then coping with the loss of her with the pain of the D&C. My husband said that as he looked over at me I was growing paler and paler, and that his grief and sadness for Amelia was compounded with his fear of losing me.

When I was pregnant with Amelia I was on 100 mg/2x daily lovenox with 1 baby asprin, prenatals, vitamin D, 4mg folic acid.

My question to all of you is, what did you take that resulted in your healthy pregnancy? The doctors mentioned Plaquenil as an option next time possibly. I have APS but not Lupus. It seems terrible to be thinking of a future pregnancy already with Amelia only being gone for a few days, but I need to look to the future, and believe that she is with her brother Carter somewhere playing in the sand, or playing with legos.

[Manofmendip]

Hi

I'm so sorry to hear your news.

I'm sure some of our lady members will reply to you soon.

Dave

[carterandamelia in reply to Manofmendip]

I hope so. Thanks for responding.

[Manofmendip in reply to carterandamelia]

Us guys can never know what it is like, from your perspective, for a woman to suffer a loss like you have.

Thinking of you both.

Dave

[carterandamelia in reply to Manofmendip]

Its true, but i try to be conscious that I am not the only one grieving. Thanks Dave.

[Manofmendip in reply to carterandamelia]

That is very brave and positive.

[Lure2]

I am 70 years old. I have APS now but long ago I had 2 healty girls. I did not have APS 40 years ago.

As you understand I remember that time so well.

When I read your story of Amelia I cried. I am from Sweden and it is diffucult to express "feelings" in another language I can only say that I feel so sorry for you and your husband. I do not usually answer on the losses of babies as I have no experience of that but I have heard of so many here who have lost several babies before they can finally hold their baby alive in their arms.

I admire you that you already look to the future as you absolutely shall do.

Thank you for telling us about your loss and I know other younger women will answer you soon.

Love from Kerstin in Stockholm to you and your husband

[carterandamelia in reply to Lure2]

Thank you for responding Kerstin, I really appreciate your kind words and view from Sweden. In the USA stillbirth and miscarriage is still a quiet topic, but since I lost Carter I have been reaching out and making sure that people know that it happens much more often then people realize. There are many forums where people have lost babies, and so many find out later that they have APS. It's amazing to me. I do wonder if I would have gotten pregnant in my teens/late teens before I was diagnosed would I have been able to have a healthy baby. Who knows, all I can do now is hope and try again and think of my babies wherever they may be. I am glad that you were able to have your girls, and that you had a later onset of APS even though its a terrible thing.

[MaryF Administrator]

Hi, I am sorry to hear about your loss, welcome to this supportive site. Please do familiarize yourself with the charity website, which contains very good information, including a list of NHS specialists, your GP should be able to refer you to one of these. Also there are many good books for sale on the charity website. It really is better to have the diagnosis in order to receive the most effective treatment. All the best to you. MaryF

hughes-syndrome.org/

[carterandamelia in reply to MaryF]

Thanks. I've been diagnosed with the LAC since I was 21 (7 years ago) and got diagnosed with APS the last few years. My first doctor was just lazy/too many patients and did not provide the care like she should have. This time around I was impressed by the level of care, they really did what they could have there was just too many things going on.

[Hopingforababy]

Firstly I'm so sorry for your loss. Reading your story is heart breaking. Sending you lots of love and hugs as I know how horrid this disease can be. I lost shared placenta identical twins at 30 weeks and had to give birth to them naturally, they had already died. I too have lupus anticoagulant but not really many everyday symptoms of APS. There was a clot in the placenta which caused the death of my twin boys and two further early miscarriages. Here is my advice but I am no doctor, this knowledge has come from seeing various specialists here in the UK.

Lupus anticoagulant directly affects implantation of a pregnancy (as well as problems in the placenta further along the line). therefore, I took heparin (which I believe is like lovenox) while trying to conceive as the molecules of heparin block the lupus antibody (don't ask me how- this is what a specialist consultant told me). This allows for successful

Implantation as the blood flow to the uterus is better and it eliminates clots in the uterus and sets the tone for the rest of the pregnancy. If the implantation is successful then a good outcome is high chance. It sounds like from what you describe that you had a sub chorionic haematoma which is a blood clot behind the placenta. I had this with the twins but it bled out early on in the pregnancy (before I knew I had lupus anti coagulant) but it can cause placental abruption later on. I believe this sub chorionic heamatoma or blood clot behind the placenta is classic with APS and shows that there are clots in the womb every month before a pregnancy even starts. I also had a small one with my daughter who is now 6 months old but it didn't cause a problem in this case. With this pregnancy I was blessed with it being straightforward, normal growth and to 37.5 weeks gestation. I truly believe this was because I took heparin whilst TTC. I was also on baby aspirin on getting a positive pregnancy test. I also took high dose folic acid for the first few weeks. Please discuss the possibility of being on a blood thinner when trying again when you speak to your doctor. Do you have an APS specialist OB/Gyn? Additionally for me this lupus anticoagulant caused infertility and I struggled to get pregnant (I was overweight and was told initially it was that- I did lose 56 pounds before having my daughter to help also) as soon as I took heparin I fell pregnant literally straight away. that's evidence enough for me. I know every woman is different this is just my experience but it must be worth exploring. Don't give up. But give yourself time to heal. Feel free to contact me if you want someone to talk to. Losing a baby shouldn't be underestimated and you must seek support xxx

[Hopingforababy]

Also just to add to this I have a friend who is undertaking IVF at a top clinic in London, she doesn't have APS (she's been screened) but had been put on heparin as they said to her that it helps implantation even in people who dont have the lupus antibody!

[carterandamelia in reply to Hopingforababy]

Thank you for the advice and I am so very sad for your losses. My son carter (stillborn at 27 weeks) had tons of clots in the placenta because the doctor didn't monitor my lovenox (low molecular weight heparin). With Amelia I found much better doctors, who I truly believe did everything they could. I will definitely be going back to them with a future pregnancy. For carter we got pregnant the month we tried. For Amelia we tried for a year and four months. I believe the infection was present which made it difficult to conceive. I would love someone to talk to with LAC/APS. I feel alone with this syndrome and have since I was diagnosed 7 years ago. I am happy that you got your rainbow baby, but am very sad about the twins.

[starships]

I am so very sorry for the loss of your beautiful children and really can't express how much my heart goes out to you.

I have APS and I also have a shortened cervix which they believe is down to treatment for precancerous cells but it could be just short as no one ever measured it before the treatment. Before diagnosis I had two early losses and for my third pregnancy I was put on one 75mg aspirin and made it to just over 12 weeks. I was advised my a lady on a miscarriage forum to go to St Mary's on London and see Dr Raj Rai. He advised a TEG test. The TEG test proved that aspirin alone was not enough so he prescribed 5000units fragmin, 150mg aspirin, 400um cyclogest (progesterone pessary) and high does frolic acid 5mg. This was started at positive pregnancy test. Unfortunately I lost my forth pregnancy early on even though on treatment and thought I would never have a baby. I was referred for IVF in the hope that they could pick the best embryo and control everything but 4 days before our appointment I was pregnant with my daughter. We started the treatment and despite rectal

Bleeding and them telling me I had lost her at 7 weeks but finding her again at 8 we made it past 12 weeks. I had an US at 14 weeks which showed a shortened cervix, I was then monitored weekly and it carries on shortening so at 19 weeks I needed a cervical stitch. I also developed gestational diabetes but managed to control it with diet alone. I was then on bed rest till 36 weeks when they took the stitch out and I was induced at 38 weeks and we had a healthy baby girl. I still can't believe she is here.

I truely admire your strength and you can always pm me if you want to talk.

Sending you lots of love xx

[GinaD]

So sorry to read this. I did not develop APS until after my 2 girls were born.

Hang in there, and my hopes and prayers are with you and your family.

Gina

[Sandrapanda]

I am so very sorry for your losses of Carter and Amelia. You are so incredibly strong and brave to get through it, and to continue trying and it is a true testimony that you are and will be an amazing parent. I have APS and been undergoing IVF for about 4 years...and after 11 failed attempts, the last 3 being with donor eggs, we had a positive with good implantation. I didn't know I had APS until I got a dvt post broken ankle in the midst of all the treatments. Once off warfarin, and then diagnosed...I restarted the IVF stuff and was put on 40 mg lovenox, 325 mg aspirin, and folic acid before transfer. Also on progesterone after the positive test. All was looking good a week before my first ultrasound when I would have been 7 weeks and I miscarried. No explanation. But I do believe without Lovenox and aspirin prior to conception or implantation the chances are less of having a full term pregnancy. I have 3 more tries allowed in my IVF program with donor eggs before we call it quits and adopt. I am just taking a few months off IVF as I started a new Job and need to lose some weight. I Am frightened of pregnancy and scared it may be unsafe for me, but am soldiering on unless the doctors tell me to stop. I also need to lose weight to improve my chances (would love to know how you did it Hopingforbaby!) I am happy to cheer you on in your continued journey and to be there to commiserate with here in the USA, so feel free to pm me. It is a very lonely disease at times. I think my siblings and other family members still doubt how serious it can be, and question if it is real since none of them have any illnesses, but I bit the jackpot with auto immune conditions. Praying for you, Carter and Amelia. (Hugs)

[AJE5 in reply to Sandrapanda]

One suggestion: use folate not folic acid. Some people can’t assimilate folic acid and get no benefit from it. Most early losses are neural tube defects . Folate is helpful. I used bio identical progesterone cream my entire pregnancy and 81 mg aspirin. My son is 18 now. I have five living children and five losses. One stillbirth at 21 weeks and 4 early losses.

[ema_35]

I am so truly sorry to hear of your story and loss of your beautiful angels Carter and Amelia. It brings tears to my eyes reading your headache and what you have been through but your love, strength and determination are obvious.

I am new on the forum also and live in Australia. Do not give up hope-I was diagnosed with lupus anticoagulant and primary APS during my first pregnancy when I was 10 weeks with my daughter in 2008. We had been trying to conceive for about 12 months so it was a huge shock and I didn't really understand what the APS all meant. I was told to start 40mg of Clexane (heparin) once a day and 100mg baby aspirin (as well as the folic acid and caltrate). All seemed well at 20 week scan with growth normal however at my 25 week appointment with OB my blood pressure was 140/100 and she suspected baby had slowed in growth. I was admitted to hospital on bed rest. With lots of prayers we made it to 27 week and 1 day where doctors delivered our little Arielle Grace due to pre-eclampsia with me and absence of growth and emergency distress for her (I just happened to be hooked up to the ECG machine when they realised she was struggling). She weighed 605 grams and spent 3 months in hospital but is now a healthy, lively 6 and a 1/2 year old little girl loving life! I have no doubt that had I not been so closely monitored, we would have lost her.

We really wanted a 2nd child despite the risks and what we were told could be an unpredictable journey. This time I started the Clexane 60mg twice a day when we found out we were pregnant at 6 weeks as well as the 100mg baby aspirin. Second time around I had fortnightly appointments with the OB and my Endo specialist. We found out at 17 weeks we were expecting a son and I developed gestational diabetes soon after. We made it to 31 weeks before I was admitted with a small bleed. After 2 days of bedrest and an adjustment/lowering of the Clexane I was allowed to go home. I was admitted again at 33 weeks and 4 days after an appointment with my Endo specialist as my platelets were dropping and they were hoping to give me something to increase them. Unfortunately they dropped below 80 before I was in hospital so the OB had to deliver our son Nathaniel John. His weight was much better at 1530 grams and journey much less traumatic and he came home after 5 weeks. He is also now a healthy and lively 3 and a 1/2 year old.

Until I found this forum I did not realise how many women suffer from this syndrome and that we all seem to have similarities but differences in how it affects pregnancy. I have heard of women going full term with only close monitoring or with just baby aspirin. Don't give up your dream of being a mum if you still have the yearning. Our pregnancies do not always go the usual way but can still result in happy endings. When you feel ready to try again, stick with the doctors you felt confident in and learn as much as you can about the APS. As I am still learning, we are our own best advocates (I have just recently bought 4 of the books recommended on this site). Please feel free to PM me if you need someone to talk to. Thinking of you. xx

[kateb81]

Oh I am so sorry for you loss. There is always hope even though it feels like a very dark place you're both in right now. I have been relatively lucky compared to some of you ladies. I was diagnosed with APS at 18 and babies couldn't have been further away from my thoughts at that time. Our first pregnancy ended at 9 weeks and I was on 70mg of clexane and baby asprin. I was on the same meds for my 2nd pregnancy but that ended at 7 weeks. I had been using a couple of APS forums so was a bit gen'd up so was aware I was on no where near enough clexane (due to my weight and being on warfarin outside of pregnancy). I got refered to another hospital to see a specialist. My meds regime was changed to be appropriate with 1mg per 1kg of weight twice a day in prep of the next pregnancy. Sadly, that next pregnancy ended at 6 weeks but I fell pregnant almost immediately and the meds seemed to work and we had our first daughter (born early and low birth weight due to APS). I then went on to have 4 more miscarriages (3 before 12 weeks) but my last loss was a little boy lost at 16 weeks. He had stopped growing and died and it was discovered that his placenta had clots causing parts to die. The birthing experience was very similar to your recent one so can sympathise. This prompted me to seek more specialist help and I went to see a Dr in London who specialised in APS and pregnancy. He told me I needed steroids to stop the APS attacking the placenta for the 1st trimester. Thankfully this worked for our final pregnancy. We had a second girl born at 35wks and low birth weight (again)

It's a horrid place to be and urge to be mum is overwhelming! We're hear if you ever need someone who understands or if you just want to vent.

Much love and good luck for the future xxx

Kate xxx

[gaye64]

Hello , I am new to the site and read your story with great empathy. I have experience of loss such as yours but from my two daughters, both girls loss was awful and as the grandma to be, i only wished I could take their place, I wish you the best for the future, thank you for sharing your story, a warm hug on its way from me to you x