The Lupus Forum banner
1 - 10 of 10 Posts

·
Registered
Joined
·
3 Posts
Discussion Starter · #1 ·
hi all,
i'm planning on getting pregnant soon (in the next few months) and i've seen the high risk obgyns, who treated me like a fricken guinea pig and tried to scare me, with things such as shadowy statistics (that were even mentioned above). a few things i heard at this visit:

docs: "we want you to think about this really hard, you could shorten your life span"
me: well by how much are we talking here?
doc: i don't know, i'm not a statistitian....

doc: well, there are other options...
me: i doubt adoption is an option for a working class family where i'm unable to work consistently
doc: well, if you want a perfect white baby...
me: that has nothing to do with it.

i'm thirty, and my lupus has been fairly under control for quite a long time, other than the normal fatigue and joint pain, which my rheum isn't too concerned about.

my whole appt there led me to feel as though i was a lupus patient who just happened to want to be pregnant, and not a women who wants to be pregnant who happens to have lupus. i understand them wanting to cover their asses because of liability and i understand, that, them being a teaching hospital and all, that i'm a fascinating experiment, but i was stressed out for an entire MONTH following that visit, which seems to me to be no way to spend a pregnancy.

i have found some midwives willing to (god bless'em) work with me and my rheumatologist on a home birth with the understanding that if something goes wrong at any point during my pregnancy, i will OBVIOUSLY go in to appropriate medical care. i guess i just want to be treated with some respect and would like people to assume that my pregnancy will go well, with the understanding that it may not, instead of assuming that because i have some medical label, that it will be horrible. such assumptions!!!! I'd like to work with someone who trusts my body before they suspect it...

after my venting, i'd like to ask, is there anyone on here who had a homebirth? a midwife? gave birth at a birthing center? what were your experiences of birth--hospital or otherwise????

help!!!!:worried: i'm so very frustrated and i need some support

much love,
sarita
 

·
Registered
Joined
·
642 Posts
Not knowing any of your circumstances or medical probs I can only give an opinion in very general terms.
Having said that I am an ex midwife....currently NICU nurse.

Think what you want out of this pregnancy. If you ever receive medical advice against home birth then don't do it.
It's about a healthy happy baby after all, not only a magical experience for mum. Not saying that these are mutually exclusive of course.
Think what support you have at home both during labour and in the days post delivery.
If some thing goes wrong .........how practical is it to achieve a quick transfer to good hospital maternity care.
Is your midwife experienced in home delivery.
This advice I would give to anyone. Also bear in mind that nearly all normal deliveries are undertaken by midwives in the UK which is not the case I believe in the US. Even with our experience Uk midwives would prefer a mum to have already had an uncomplicated delivery before encouraging a home birth for subsequent babies.

There will be of course other considerations due to the lupus which others may add to..........for example are you on blood thinners or have bleeding problems.
It appears to be fairly common to flare postnatally so you need your rheumie on board.

Remember this is very general advice.
You do of course need the advice and cooperation of your obs and rheumie team with planning your care.

The best of luck
 

·
Registered
Joined
·
14,661 Posts
I can only give very general advice too and with no professional experience as well as going back 43 years when they wouldn't take me into hospital because it was fully booked and I was not in any risk group. The midwives were first rate and wonderful. I had a great pregnancy and no problems until the last minute when they had to call the GP to do an episiotomy which they were not allowed to do. They were getting very concerned about both me and even more important the baby. The GP never came and luckily all went well. Actually the GP did come about 5 hours after the birth. A few weeks later he lost his licence because of a drinking problem.

My point is that you need to know exactly what emergency facilities are available as anything can go wrong at any point. I don't know if it would have been technically possible to move me at that stage. Some places have special flying squads for home births, that turn out to need specialist care.

There is also the question of the baby being born needing unforeseeable immediate special care - what would happen then where you live ?

What are the maternity facilities like where you live? Some are fantastic these days with the best of both worlds on offer.
I rather fear that the glorious homebirth notion has been grossly overhyped like many other perceived 'natural' things and processes. This is purely my personal and rather cynical view, not meant to be inflammatory or debatable - just another way of looking at it, take it on board or leave it. I am well aware that my views about other things to do with childbirth circumstances would be considered very old fashioned.

Perhaps you get a midwife who will go into the hospital with you for the birth so you have a familiar figure there with you ?

Maybe you can find other high risk ob /gyns who would be happier to work with you

Wishing you well and the best of luck :)

Clare
 

·
Registered
Joined
·
300 Posts
Hi sarita and welcome to the boards,

I dont have any home birth or midwife experience, but am currently pregnant with my second child with no major complications. Fortunately, lupus was under control before I got pregnant which most docs would advise before you begin trying.

That being said, I'm not sure how many OBGYN you have seen, but based on the conversation mentioned, the recent one seems arrogant, condescending and misinformed. Maybe you can ask your rheumatologist to recommend one that he works with at the hospital, a colleague?

Big Sis and Clare have given you some excellent advise and things to consider. Choosing between a midwife and OB is an individual decision but you should consult your rheumy as well.

I'm sure someone will be along with personal experiences to share with you. Good luck with whatever you choose!

Sharon
 

·
Registered
Joined
·
4,369 Posts
Hi Sarita,

I can only give you advice as a Mum and prior to having all my children never even new that SLE existed (do know as I have it)!

I do hope that once you are pregnant you sail through the pregancy without any problems. If you do manage to get adequate care for a homebirth can you change your mind further through the pregnancy if you want. I must say that I went into labour 1st time with a birth plan that was birthing pool and no drugs - this never happened! I had to have epidural/syntanox and a quick labour due to very high blood pressure! My shortest stay in hospital after birth was 5 days due to my health!

My story - I live only 0.5 miles from hospital and never had a home birth and I'm very glad that I didn't. I have 4 children (+ 1 misscarriage). After my first birth my 2nd pregnancy I was then treated as high risk due to pre-eclampsia and having a low birth weight baby even at 41.5 weeks (only 5.14 lbs). I went on to have problems with all pregancies and all labours and that was even without the diagnoses of SLE classed as high risk! I am so glad that I did attend the hospital for labours as in a few instances either myself of my babies lives were at extreme risk and all was resloved within minutes! I'm not sure what would have been the outcome if I was not at the hospital.

I do wish you luck with whatever option you choose and a happy healthy beautiful baby!

Love Lesley
 

·
Registered
Joined
·
2,661 Posts
Hi Sarita,

All the best with your baby making plans.:blush:

It was sensible of you to talk to the obstertician pre conception, I'm just sorry that the appointment didn't go well. However much the doctor knows or can skillfully do, if he/she lacks good listening and communication skills, you (the client) can leave feeling like you were abused, not helped.

I don't live in the US, and have only second hand knowledge of how things work there. I do have some experince as a midwife in the UK and a little in Holland (where I live now).

Having lupus means that you have a higer chance than the general population of developing certain complications in pregnancy.

There is a increased chance of pre-eclampsia, growth retardation in the baby in utero and pre term labour.

Women who carry the anti Ro antibody are at risk of having a baby who develops neonatal lupus.

Women with APS have a higher risk of miscarriage and still birth.

However it is possible to make it to full term without problems and to have a normal birth without interventions, even with lupus.

For a healthy woman with no medical complications, and a normal pregnancy that leads spontaneously to a normal labour, home birth is statistically as safe (and depending on things such as quality of care and distance to a hospital with NICU facilities), sometimes even safer.

Strictly speaking, someone with lupus should be directed to high risk obstetrical care, because of the risks of complications the disease brings, so isn't a candidate for home birth. This is the official policy both in the UK and in the Netherlands.

However, the most unsafe choice is an unplanned homebirth without a trained professional present, so in the UK at least if a women insists on a homebirth regardless, mosts midwives will agree to continue to give care, with the understanding that the woman understands she is making a choice that has been advised against. In other words you may be asked to acknowledge (and possible sign a legally binding statement), that you understand the issues and take responsibility for your own actions and won't sue the midwife later if things don't go well.

From what you write though it seems you are more than willing to take medical advice and treatment if it is needed, and would transfer to hospital if that was suggested. My opinion is that this is a sensible attitude to have.

In the general population, of all the women who begin their pregnancy without complications, about 30% will end up having a normal vaginal birth without complications or interventions. Of course this is ALL interventions, small (like being monitered with a CTG machine or having a IV canulae in) and big (like having an emergency ceasarean), so a large number of the remaining 70% still have a realtively normal birth experience.

So, even if you decide to plan a homebirth, there is statistically a good chance that you will have a reason at some time to need to transfer to the hospital. That is important to remember and to accept. Don't feel like a failure or that the system has failed you if this happens. It has nothing to do with success or failure, just with being safe.

Something to think about is hiring a midwife or doula to support you in labour. This can make a big difference to how you experience it, whether in a hospital or home. Constant support of another women has been shown to help the normal progression of birthing (not that hubby isn't needed, but having a female support person is a useful adition).

In my professional experience, Ï've not been asked to assist in a homebirth of someone with lupus, but then, of my 101 deliveries so far, only 10 of them were homebirths. I did have someone with APS who wanted a homebirth, and after discussing this with my manager and supervisor, we agreed to support her decision. In the end she wanted to go to hospital, but this was her choice, not something forced on her. Still, if she'd wanted it could have happened.

When I was younger, pre lupus I was certain I wanted to give birth at home no matter what. Now, 4 miscarriges and multiple lupus/APS problems later, I'll be glad if I ever have a live birth, however it happens.

I hope this helps a bit:blush:

X C X
 

·
Registered
Joined
·
4,444 Posts
I can certainly relate to your feelings. I also went to a University high risk Ob-gyn for my pregnancy. I did not have anyone talk to me the way they talked to you, except for before I was pregnant! Once pregnant, they are much more likely to just do their job, which is to monitor you a little more closely than they monitor everyone else.

Should you choose the midwife option, just realize that the standard of care for a lupus mom-to-be is different. Essentially you are seen twice as often as a non-lupus patient starting in the second trimester. You should get ultrasound scan at least twice (at 20 weeks and again at 28 weeks), and more beyond that if there is any concern about IUGR. Testing for urine and sugar should be done at every visit (because gestational diabetes and pre-eclampsia are more common). Most providers in the US will also want weekly Non-Stress tests done starting at 32 weeks, and twice weekly tests starting at about 36 weeks.

There are always individual differences, depending on how your lupus affects you and what antibodies you have. If you have anti-cardiolipin or lupus anticoagulant antibodies, then you may be put on some low dose aspirin to protect against clots forming in the placenta (or Heparin). The SSA antibodies would warrant a closer look at baby's heart during the ultrasounds, etc. It is usually advised to get a 24 hour U/A done to see how much protein you leak normally as well to try to discern if it appears later whether it is due to lupus or pre-eclampsia.

This was my experience. I took it upon myself to maintain an extremely positive attitude and believed in my body's ability to maintain this pregnancy despite the extra testing and vigilance on their parts. In my state, midwives are not allowed to do homebirths without risking jail! They are trying to change the law. If I didn't have lupus, I would have much preferred seeing a midwife and would have loved to try a homebirth.
My experience was not fantastic, and I did not enjoy seeing practically a different staff doctor and resident physician at every visit. I would have thought continuity of care would have been a much better thing. But I wasn't going to let anyone ruin for me the joy of being pregnant either!

In the end, for me at least, all the extra monitoring and testing was unneccessary. I think many lupus pregnancies go quite well actually. I certainly hope you experience that too - & if the midwives will take you on as a client - & everything goes well & you could get to a hospital fast if you needed to - then I can see why you would want to try that option first at least.

Best wishes for you... I hope we get a return visit from you soon with a pregnancy announcement! :)
 

·
Registered
Joined
·
1,110 Posts
Hi Sarita

I'm probably not much use to you, but you asked for experiences...

My first birth - I was too shy to ask for a home birth. The midwife attached to my doctor's surgery was upset after I had the baby in hospital because she was confident about doing home births, and would have loved to do a home delivery with me. I just got caught up in a system which at the time, assumed you would have your baby in hospital. In the event I spent as much of my labour as I could at home (mainly soaking in the bath!) because the journey to the hospital was only 15 minutes away. I had my baby 15 minutes after I arrived. I had a straight-forward delivery with midwives who were great fun ... if a little flustered and shocked to begin with. I enjoyed all of it, despite the pain, but did not rush to go home because they said to take advantage of the rest. When I had been home for a week or so I understood why, and was glad of their advice.

The second time I had moved area, did not know 'my' midwife, and felt differently to the first time. This time I knew that for a home birth I would have to trust the midwife's competence and confidence. Some are just not confident enough. I went to hospital again. Oh ... and I set off a bit sooner. Baby born 30 mins later. No probs - midwives fab. Again - only went home when I was told to!

The third time, the scan told the doctors my baby was older than the dates I gave them. My dates were correct. There were reasons I knew my dates. I was a nurse at the time. My dates were correct. The hospitals doctor insisted I be induced bofore my due date. I pointed out I knew my dates. They pointed to the scan results. I would not be induced.

Two weeks later they insisted I went in to be induced again. They asked my HUSBAND how WE would feel if 'something happened to the baby as a result of waiting'. I was coerced into being induced ... only 1 day before my own due date, but 2 weeks late according to the scan. I did not like it. It was not like a 'normal' labour, but I had a safe birth and a healthy baby. I am glad of that, but wish I had been listened to. It spoiled the experience for me. I felt resentful and scared throughout the experience because the sequence of the labour was alien to me and because I felt controlled. It also took several attempts for the inducment to work and up until this pregnancy I had NEVER had an internal exam on any kind. Quite right. There was no need.

So I can't help, except to say I know how it feels when you feel coerced and when you are questioned about something as natural as childbirth. However, I have healthy children, and all these years later this is all that now matters to me.

I thought labour was painful, and whilst I hopd I would manage without too much medcial intervention, I was happy to take it as it went - that is, have what I felt I needed at the time. I was lucky in that I only needed gas and air. However, it did hurt, and each time I did ask myself if I should ask for pethidine or an epidural now! (Too late every time!) I would NOT have had a choice in the latter if it was a home birth, and I think that would have scared me. What kept me calm and reassured was the fact that I knew I was in the right place if things went wrong, and the midwives were knid and efficient.

Even so, I would love to look back at the memory of at least one home birth.
Alas, it is not always to be.

I hope you get what is right for you in the end, and I wish you all the best in the world.

Take good care

I am very sorry Sarita, but my illnesses were diagnosed long after the births, even though the symptoms were certainly there at the time. Importantly, I was not on any of the medication I am now taking. If I had known I was ill I would still have had my children because my symptoms were very mild at the time ... I certainly was not tired all the time.

If I felt the way I did last year I do not have coped with a new baby.

:love:
 

·
Registered
Joined
·
10 Posts
Hi,
I was recently diagnosed with Lupus, have antiphospholid antibodies, and am 18 weeks pregnant. I had the lupus when my son (now 3) was born too, we just didnt know about it.
Anyway we checked into all options here for giving birth. I was very unhappy with the bigger hospital which most people would use, mainly because i was 2x advised that i had miscarried and needed a d&c and only because of a very vigilant midwife basically shouting the head of a dr did they recheck and find my son's heartbeat. After a few other incidents I was determined not to give birth there and really checked around. I found a smaller less high tech hospital that was great, my son was born with only midwives present, although the Dr.s are in the building and can be called in at once if required, and had a very simple uncomplicated birth.
I would like a home birth too, but am considered too high risk, so this is about as close as I can get to a more natural birth process.
I would really advise you to check everywhere near enough to your home to reach when in labour, and see the differences in different hospitals, birth centres etc... You might well find a very natural pleasant midwife led facility, that just happens to have Dr.s on site just in case they are needed.
Best of luck to you, and yes there are complications possible with lupus, for me it was the blood clotting problems, but this is corrected by use of blood thinners, but there are risks with near everything. My way of thinking of it is if you look how many people take deliberate and foolish risks in pg, a child born to a mother with lupus who desperately wants that child is still going to have a lot better chance at things then many others. We struggled so long to have children I can truly understand the desire for a child of your own.
I hope everyting works out well.
 

·
Registered
Joined
·
202 Posts
I had a very similar experience with an OB...the only difference being that I actually was pregnant at the time. She went on and on telling me what a bad idea it all was while I'm sitting there on a pregnancy high and wanting to do what's best for myself and the baby.
I'm in Canada...so keep this in mind as you read here. My sister has had both of her daughters with a midwife...our system works that you can choose to use either a midwife or an OB and they are licensed practitioners both acknowledged and registered with our health care system and our healthcare covers either option.
I had gotten to know the main midwife quite well through both of my sisters deliveries as I'd been present at both and couldn't wait to call and tell her that I was pregnant and would be needing her services. She told me that she needed to do some research and get back to me about something. She eventually called to let me know that they couldn't treat me due to my autoimmune disorder. I was devestated and fell apart bawling on the phone...I'm really hoping I can blame some of this on hormones...as I was embarassingly out of control. She explained that as medical practitioners they did not feel that it was in the best interest of myself of the baby to be treated by midwives and that as much as they advocate for natural births and the mother's right to choose how she wants her delivery to go, they didn't feel this was a safe or practical decision. They felt that the midwives training did not cover some of the medical tests and advice that may be needed during my pregnancy and that they hoped that I would receive more through care through a high risk OB. She did take a lot of time with me during this difficult time and gave me recommendations for several high risk obs that she thought would be compatable with my other wishes as well as being able to treat me properly in a medical sense.
At the time I was really upset and wanted to argue with them and get them to change their mind...this wasn't going the way I had planned it out in my mind.
Looking back I am appreciative and respectful that they were professional and conscientious enough to put our lives first and be honest with me about what to do.
My pregnancy unfortunately ended in a miscarriage but through this experience I have made contact with a lupus pregnancy specialist who is very highly spoken of and will be seeing him next month before I make the decision to TTC again.
If he gives me the go ahead to get pregnant again my new plan is this:
I will listen carefully and with an open mind to his advice on another pregnancy
I will choose a high risk OB carefully and hope to find someone that can respect my wishes while providing me with the care that I need at the same time
My goal...to have a healthy & happy pregnancy and baby.
I've had to let go of a few of my preconceived notions about how it would go, but I now feel that in the end...I will be far happier knowing I've done all that I could to meet my end goal.
I truly hope that you find the answers you are looking for and that all your goals and dreams regarding your family come true.
Keep us posted :) Sorry this is so wordy...this is a subject close to my heart right now...plus...I'm always wordy...who am I kidding ;)
 
1 - 10 of 10 Posts
Top