miscarriage of twins: I have just miscarried twins... - LUPUS UK

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miscarriage of twins

Emily00 profile image
34 Replies

I have just miscarried twins at 16 weeks. I had a miscarriage of a girl at 15 weeks last but wasnt receiving any treatment at the time and the baby had interuterine growth retardation and insufficient placenta and my lupus was not under control.

This time I was on clexane and aspirin and lupus was well controlled with azathioprine, prednisolone and plaquenil. The twins were growing really well - each week bigger than their age - and had strong heartbeats.

I was referred to our public high risk clinic when I was 5 weeks but my first appointment wasn't scheduled until 14.5 weeks. The day after my first appointment one of the babies died and was miscarried a week later. I had been to emergency three times in the weeks before due to bleeding. On the third time I was sent because of a fever but because of a spike of protein in my urine it was all put down to lupus flare and I was sent to renal specialist.

My lupus markers were all good but I had high CRP and a low grade fever which indicates infection and the protein settled within a day also there was a bad smell when the first baby was delivered. At my appointment with the clinic I told them about a bad pain that had got progressively worse over the week. This all could suggest that I had chorioamnionitis especially as I am on heavy immunosuppressants.

I feel the clinic was too quick to declare it was a lupus complication and not interested in investigating anything else.

The high risk clinic was contacted all throughout but never came to see me, I feel they should have seen me earlier when I started having problems and maybe antibiotics could have been used. Am I wrong to expect that I should have had an earlier appointment? Is it normal to wait until 2nd trimester before for obstetrician and midwife appointment. Has anyone had experience with high risk clinic?

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Emily00
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Tiras profile image
Tiras

Emily:

I am so sorry, my heart goes out to you!

You will be in our prayers and thoughts!

I am a guy so I don’t have any information on your situation. However, I can tell you this. I have malignant hypertension, which basically means they can’t control it even with medication, it may be high one day and normal the next. It could be high and normal in the same day. Doctors say it is Lupus related issues. Yes I think the doctors use Lupus as an excuse to look no further. It is simpler for them to just say Lupus is the issue.

I hope you are as well as you can be under the circumstances?

Wishing you the BEST!

Emily00 profile image
Emily00 in reply to Tiras

Thank you for you thoughts Tiras, Yes, I had planned pregnancy with my rheumatologist who said my lupus was under control and stable for 8 months. I also saw my renal specialist and rheumatologist in the week before miscarriage and both commented that my lupus markers were still good and stable. The renal specialist said it looks like you have an infection because CRP is up and is not a marker for lupus inflammation.

The obstetrician walked into the room after miscarriage and casually declared "Oh, its lupus complication" without really looking at me or explaining anything. It shows you really have to be your own advocate and not just trust that they are doing their best for you.

Tiras profile image
Tiras in reply to Emily00

♥️♥️♥️♥️♥️♥️♥️♥️♥️

Lupiknits profile image
Lupiknits

I’m very, very sorry this has happened to you and am sending a cyber hug. I had one miscarriage and we can each understand a little about the emotional turmoil.

I had my pregnancies long before my physical illness so I can’t relate directly what has happened to you. It does sound like it’s all been badly managed, though. I was seen well before my 2nd trimester and was not high risk. I don’t know where you live but I’m very angry on your behalf. A couple of friends recently went through high risk pregnancies with very continuous and early care.

Emily00 profile image
Emily00 in reply to Lupiknits

Thank you Lupiknits,

I had consulted with the clinic as preconception clinic and they told me to get referred as soon as I found out I was pregnant. I did expect that they would look after me intensively but now I think they only bother in later pregnancy.

Lupiknits profile image
Lupiknits in reply to Emily00

I would have had the same expectations. Are you in the US? If so, I’m sure others can guide you further. All I know from the close experience of others that you would have had very close care in my English city.

I’ve been thinking of you on and off all day, and my heart goes out to you. Hard to phrase it without sounding trite, but I’m deeply sorry about what has happened. xxx

Emily00 profile image
Emily00 in reply to Lupiknits

No it doesn't sound trite, i really appreciate your message of support - it can feel lonely to go about your day surrounded by people who can't really understand - And thank you to Paul Howard for running this excellent support group.

I'm in Australia and seen at the largest tertiary hospital in my state for rheumatology and the largest tertiary hospital for women and newborns - I was optimistic that I would get the best treatment, but it seems they are too understaffed.

LupusKaren profile image
LupusKaren

Dear Emily, I am deeply sorry for your losses truly. I am not a mother, but I have had one miscarriage at 14 weeks many years ago, I did not have a lupus or APS diagnosis. Am I right in thinking you are in the USA? If so, I have no idea how your system works, hopefully one of our USA contributors can help you out with your questions. In the meantime please do take gentle care of you. ((((Hugs)))))

Emily00 profile image
Emily00 in reply to LupusKaren

Thank you, Actually, I'm in Australia and previously have good experience and trust in the public health system here. In the last few years government funding has decreased more and more and hospitals are understaffed and stressed. There's been a decade long campaign to push people into private which I can't afford. We are heading towards a similar crisis to the NHS right now which saddens me because I strongly believe in universal health care and don't think there should be a two-tiered system.

djsema profile image
djsema

I’m so sorry. I can understand how you are feeling. You are in my thoughts and prayers.

Emily00 profile image
Emily00 in reply to djsema

Thank you djsema

Barbarajeand profile image
Barbarajeand

Dear Emily,

I am deeply sorry for your loss. You are in my thoughts and prayers. Such a traumatic event can be so devastating. I am at a loss in finding the right words to express the emotion I felt while reading your post. I felt your pain and my heart goes out to you. Take gentle care of yourself.

Barbara

honeybug profile image
honeybug

Hi Emily00

👼🕊👼🕊👼🕊👼🕊👼🕊

Ohhhh Hun I’m sooooo very very sorry about your miscarriages.

I worked in a private OB GYN clinic here in the USA 🇺🇸.

We advised all obstetric patients to seek medical care as soon as pregnancy is suspected.

Since you have AI and know you are high risk it is imperative to do this ASAP.

Also my doctor/employer trained us to advise all patients with pregnancy intentions to NOT take drugs as it will have negative affects on the fetus/s including birth defects miscarriages and in some cases danger/death to the mom.

You should be cared for by a high risk clinic/team. As you have Lupus it poses its own set of dangers that are compounded by the drugs used to treat/control it.

You can visit a world renowned clinic site here in the USA 🇺🇸 known for excellence in diagnostics and care. Sorry I still can’t do links

mayoclinic.org

Best wishes for answers to your predicament.

Again soooo sorry for your losses.

🌿🥀🌿🥀🌿🥀🌿🥀🌿🥀🌿🥀

EvaJo 🤗💗😘🙏

Emily00 profile image
Emily00 in reply to honeybug

Thanks honeybug, they did tell me to contact them ASAP but unfortunately they didnt do anything ASAP

honeybug profile image
honeybug in reply to Emily00

So sorry sweetie 😳

🤗🤗💗💗😘😘🙏🙏👼👼🕊🕊

Hi Emily i was so saddened when I read your post and am so terribly sorry you have suffered the loss of your children. My heart went out to you as I too have had 2 miscarriages very early on in my pregnancies and can only imagine the grief you and your family are going through. I am Shocked at how you have been treated as you should have been seen much earlier as lupus is a high risk illness. I feel you could go to see a solicitor for advise and am disgusted with the attitude of the medical profession as you was their patient under their care. You have been terribly let down and I feel they have been medically negligent. They had all your information before them including the loss of your daughter at 15 weeks. Their attitude towards you and their comments are uncalled for, insensitive, disrespectful and unkind. They should have been with you every step of the way making you a priority. I am appalled at their unfeeling and callous attitude with a lady in your condition who has had to go through a second miscarriage. They need to hang their heads in shame each and every one of them. Lupus is such a horrible illness and it’s just so complicated. Try and see if you can see other another rheumatologist specialist to see what’s happening with you and who could give you some more advise on your symptoms and how to get you well. To be battling lupus and also suffering from the trauma of 2 miscarriage s must be so hard for you. My heart goes out to you and your family and I hope and pray somehow you get well and you all get the support you need. Have you thought about counselling I tried it and it helped me. Maybe You need a second opinion to find out what went wrong and you need in the future top class care. Could you start a campaign for better healthcare so no one else has to go through this or do you have a friend or family member who could help you do this for you. I think it’s awful that you and other lupus mums didn’t always get the best care from day one as I feel most of the medical profession are letting us down and fobbing is off. I feel it’s such a tragedy and one that could have been handled better and one that could have been avoided. We trust the medical profession will help us but somewhere along the way they can let us down. will be thinking of you and hoping you get some answers and much better treatment from future staff. You deserved better you and everyone who is ill does. You are in my prayers. You must rest and to eat well as you need the strength to get you through what’s happened to you. You have suffered so much. I am very saddened at hearing of what you have been through and their must be people out their who can support and guide you towards better future healthcare. if you need help, advise or support we are always here for you. Take care. Elena

Emily00 profile image
Emily00 in reply to

Thank you Jeromicus, You have really summed up how we are feeling about this. I have to put a lot of faith and trust in doctors and hope they will do the best thing. It has taught me that I need have a bit more fight to demand what I need.

in reply to Emily00

Yes I agree Emily you have to fight them

Every step of the way plus be your own gp and medical researcher at the same time. Sadly today we can’t trust the medical profession to do what’s right for us patients. There’s so many people out there who are unhappy with their care and treatment it’s a national disgrace. Health care professionals all giving different opinions. Drs refusing to send patients for tests and not taking us seriously. Eventually after a fight if your lucky enough to get an appointment it’s then waiting forever on some list. Sadly today It’s all about money and targets over quality of care and lives. At least on this site there’s lots of lovely people with great advice and information so I always read as many posts as I can as for me it’s taught me so much plus I have learned what to ask the Drs on my next visits as I am presenting with scleroderma and Sjögrens as well as lupus symptoms. I wish you all the best Emma especially as you have gone through so much and you are needing further answers. I hope your finally getting better treatment and getting the help and support you need. Take care. Elena

Lily77 profile image
Lily77

I am in line with Evajo as I understood that lupus pregnancies, in the UK for sure but also I thought in the US, are now routinely considered high risk. For the reasons she has given regarding both the lupus itself and the medications involved in its treatment. I had a series of early miscarriages before I knew that I had lupus. All the tests being carried out were unable to find a cause. Doctors kept saying everything looked healthy. Then I also miscarried twins and unfortunately one baby died in my womb and had to be surgically removed. I am incredibly sorry for your losses...I remember feeling stunned. My hopes are that you find the right expert advice and intensive care now and going forward...my thoughts will be with you. Lily

Buckley123 profile image
Buckley123

I’m really sorry for your loss I don’t know if this is even a suggestion that may help but have you been tested for aps ? Huges syndrome ?

I really can not imagine how you must feel

Your in my thoughts ❤️

Emily00 profile image
Emily00 in reply to Buckley123

Hi Buckley, Yes, I do have APS and that was a problem for my first miscarriage - possibly for this one, but I was on clexane and aspirin and they were growing so well.

Buckley123 profile image
Buckley123 in reply to Emily00

I’m so sorry to hear this Emily 💋

Cathy13 profile image
Cathy13

Hi Emily I’m very sorry to hear about your loss. Look up Dr Brooke Goldner, she is free of lupus 14 years and was told she would never have children before that, she has a protocol to follow but she is now lupus free with 2 healthy boys, if it’s something you are interested in I think her Facebook is Goodbye Lupus, she also has a book out. Hope this helps! x

Patricia2015 profile image
Patricia2015

I am just so sorry for your loss ❤❤❤

DRunnerchick profile image
DRunnerchick

I am so very sorry for your losses! It’s terrible that they made you you wait for care and are so callous about it now when they know they have done a shoddy job of finding a cause. Take time to mourn the loss and process the grief. I hope your lupus remains at bay, controlled. 🌷😘🙏🏼

D🏃🏽‍♀️

Banditqueen profile image
Banditqueen

I am very sorry to hear of your traumatic and loss of your babies. My heart and soul go out to you. Please take care of yourself. Love and prayers in this very sad time.😪🙏 Ah, bless.

nanleighh profile image
nanleighh

Hi Emily, first of all I am so very sorry for your losses. I am a retired OB nurse, and we always saw our high-risk patients between five and six weeks. If they had sticky blood or Hughes syndrome, They were started on Lovenox right away and kept on there until 36 weeks. Then there were changed to Coumadin for the remainder of the pregnancy. For those that did not have Hughes syndrome they were given aspirin every day and followed very closely by a perinatologist. We had many successful pregnancies with lupus patients. There are many things that can cause miscarriage, the most common being a genetic mutation. They should have done further studies to see why you keep miscarrying. It could be lupus related but it also may not be. Have you already had blood studies to see if you have a clotting disorder or sticky blood? I wish you luck in the future, I know you’re going through a grieving process right now that’s very difficult. But I hope you don’t give up, because with proper medical care or you can have a successful pregnancy. ❤️Nan

Emily00 profile image
Emily00 in reply to nanleighh

Thank you nan, I did expect to be seen early so was surprised when my first contact with either midwife or ob was at 14.5 weeks. My other doctors seem to think this is normal due to our health system. I will have to try and pay for a private ob next time. Rheumatologist has now said I should start on clexane straight away. I do have APS but have never had a blood clot.

Shann07 profile image
Shann07

Im so sorry for your loss it’s just heartbreaking for you, there are really no words. I understand your heartache as Ive been there, twice. First time I lost my baby boy at 25 weeks and I almost lost my life too, I had organ failure and was on life support, but at the time I had no underlying medical problems - thats what I was told. The preganancy was going well right up to that point until I took a severe pain in my tummy while at work, long story short, the pain turned out to be liver failure, I had such a scary horrendous experience and was in ICU for weeks. It took me months of counselling to get over it. Then I became pregnant again, not planned, and I was assured that what happened to my first pregnancy was something freak and wouldnt happen again as I was healthy but tragically I lost my second beautiful boy at 23 weeks, although I didnt become ill as I was admitted to hospital on time. I had normal deleveries with both babies, it was horrendous being forced through labour knowing my babies had died. I go to hold each of them and still have their finger and foot prints & photos, they both looked so perfect. My world just fell apart. I was advised not to have any more pregnancies as I was considered too high risk and drs couldnt figure out what was the cause of the complications. Fast forward a couple of years Drs discovered I had Antiphosphilipid Syndrome (sticky blood) and around the same time of being told this I discovered I was pregnant again and terrifed. As I was considered very high risk the obst advised me to terminate the pregnancy because the risk was so high for me, but I just couldnt go through with it. I prayed everything would be good for me and my baby and this unplanned pregnancy was maybe meant to be. I was given aspirin & clexane injections from 8 weeks gestation. I was scanned every 2 weeks with blood work done, checking liver function, clotting etc, and then scanned every week from 21 weeks. I had a planned ceasarian delivery at 36 weeks and the pregnancy went really well! I cannot explain how terrified I was the whole time as my well experienced obst told me he was very nervous for the health of me and my baby and didnt give me any guarantee of a happy outcome, in his words all the could do was support me medically but the outcome was a lottery. So when my baby was born there were lots of tears & cheers in the delivery! I had my miracle baby! 3 years later I planned another pregnancy with the go ahead from the same obst & I was treated the exact same - from 8 weeks & had another beautiful baby boy! When my second baby boy was 1 year old I took very ill and eventually was diagnosed with lupus & mixed connective tissue disease & APS. So I felt so incredibly blessed to have had 2 healthy pregnancies with lupus underlying, this obviously was the cause of all my life threatning pregnancy problems. Only someone that has been there can truly understand what you are going through. There are so many emotions, loss of hope of ever being a mum, greiving for your baby and all the dreams you had, I felt like a failure as a women, that my body couldnt do something so natural. I lost all my confidence. Why did I become pregnant so easily but my own body would kill my baby, there were some very sad and lonely days. I have never got over losing my babies, it changed me as a person. Having my 2 beautiful boys did replace the loss in a way but in my heart I will always have my 4 wee boys. I hope you will one day have a successful pregnancy, and sending you hugs for what your going through, its so hard. Through time you could ask the advice of a high risk obs on how to plan a future pregnancy, maybe get tested for APS - as this is known to cause late miscarriage and is associated with lupus. Dont give up hope of a happy ending, I was told I would never carry a baby to term and I did twice! I hope you will one day too x.

Emily00 profile image
Emily00 in reply to Shann07

Thank you Shann, I'm so sorry to hear you lost your babies so late that must have been absolutely devastating for you. It gives me hope that you fought through it and had two boys.

Josieswolf profile image
Josieswolf

Hi I feel so very much for you. I don’t know that much what happens now but I would query what their protocols are. You also have the right to go to PALS patient and advisory liaison service they will represent you in any worries regarding your cara you could also ask a solicitor ( a bit heavy I know) but if you feel the heath of you and your babies were compromised don’t give up.

I can’t imagine how you are feeling and my heart goes out to you. Stay strong but remember to grieve also don’t let it get lost in all the anger with the hospital. You need to deal with the emotions of all this for your own benefit in the long run xxx

Emily00 profile image
Emily00 in reply to Josieswolf

Thank you Josieswolf. I will be trying to get answers when I feel a bit better and have some energy back.

Penelope-Mary profile image
Penelope-Mary

Emily I am so so sorry for you.

I’m in Australia too; and I’m devastated that our public system has let you down so badly.

I have Lupus but not diagnosed until long after my children were born but at dx discovered I had APS which explained my loss of one twin each in 2 pregnancies and 2 other early second trimester miscarriages.

I hope you can bounce back; you are very brave.

Hugs to you

Penelope 🦋🦋

Sezvic profile image
Sezvic

Hi, I know that post it’s a bit old. I got lupus and was pregnant 3 years ago. My pregnancy was a natural pregnancy. When I filled up my form online to start ante natal care,I made sure I put down I got SLE and rheumatoid arthritis bcos I was told by my rheumatologist I will class as high risk. I was given an appointment to see the consultant after 12 weeks. I thought I was supposed to see a consultant a bit earlier as I got SLE. Unfortunately I miscarried at 7 weeks. I was so angry after my miscarriage and still are. I haven’t been able to get pregnant again.

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