Pbc and pregnancy

[Lisa30]

Has anyone with pbc managed to have a successful pregnancy. I would like another baby but would like more advice on the risks involved to both mother and baby. If anyone has any information or experience please help.

[TracyLou]

I was ill after having my first child in 2001 and was not diagnosed with PBC until 2005. Im sure I had PBC back then. When I had my second child in 2003 I then started having tests and my dr assumed I had been drinking. It wasn't until I was pregnant with my third in 2004 that I had become much more ill. So I guess it had taken its toll on my health having my children so close together but I got through it. I wasn't able to breastfed my third child due to being so ill. Maybe if I had know then I might have waited a bit longer. Its difficult to say.

The symptoms i got in pregnancy was itching and fatigue not really that much different to what I have now. I cannot tell if my liver suffered more when I was pregnant because of not having a diagnoses at the time. I take Urso now and my blood test are nearly normal.

I hope this helps.

[Lisa30]

Thank you Tracy for replying. Its good to know that you managed pregnancy a few times. Did you have a c section with your third child? According to my consultant i will need a c section as its to much pressure on the organs, have you heard this? How do you cope now with a busy family life? I am okay and do my best to forget i have pbc but my tiredness makes that difficult at times, i haven't been out at all this week but work tomorrow. I am sure next week i will be good as new and dashing around

[EAJSWW]

Hi,

I was diagnosed with PBC during my last of 4 pregnancies. However I have been through my history with my specialist and he reckons looking at old blood tests and history that I had PBC for at lest 10 yrs before I was diagnosed. Therefore all my pregnancies would have been carried with me having PBC.

I would say the difficulty with a question such as yours, is that many of us can say that we has Sucessful pregnancies but really the question is one for you, your partner and your specialist.

There is still much research going on into PBC, and in my opinion it is not just a straightforward question about carrying a child to term.

Pregnancy affects all women anyway, even healthy women, and multiple children can be very hard work. I would never ever wish my children away, but if i had known pre children the level of difficulty i would have juggling children and my illness, I probably would not have had as many if any (this of course is just my opinion) But I always seem to feel guilty for not being able to do enough for and with my children.

There are also the questions about medications and effects on an unborn baby... only a specialist can advise you on these risks.

last, there is still many unknowns as to which Auto immune diseases are genetically passed on. i don't believe that there is any evidence as such to say PBC is passed from Mother to child, but without a doubt other Auto immune disease are. In my children alone there are three auto immune conditions , I have three, and in my up line there are numerous that I am still finding out about. I believe these are all considerations when considering having a family.

It is a very emotive subject, and a very personal choice but might be worth speaking to your specialist again and maybe asking to speak to an immunologist who can advise about the potential of passing other immune conditions on?

Also I would be interested in why your doc thinks a C/section is necessary? A c/ section is of course major surgery that takes months to fully recover from and with a new baby, and an illness which causes fatigue is a huge consideration. I know many women have C/S for unstable heart conditions that will not cope with the pressure of pushing a child out, and other conditions which need alternate modes of delivery to expedite delivery for health of the baby... but to say it will put too much pressure on your organs is a bit wishy washy and I would ask him to explain further.

I hope you find a solution that suits and wish you well x

[Juamcc in reply to EAJSWW]

Only the mother c a rries the mitochondria which must be present in order to diagnose autoimmune PBC.

[PBCRobert Partner]

Hi, Lisa.

2 questions: are you a member of the Foundation? Secondly, have you read a copy of our compendium? (it is available to read in the members' section of our website). It has a good section on PBC and pregnancy.

Yours,

Robert.

[Pea1234 in reply to PBCRobert]

Hi Robert,

How can I get a copy if this. I joined. When I click on the members link it asks for a login/password. I don't know how to get one. Any advice is greatly appreciated. I was diagnosed with PBC a month ago while getting tests done prior to ivf. For the freezing of my eggs.

[catherine69]

Hi Lisa

hope you dont mind but I was telling a lady on another site about your enquiries regarding pbc and pregnancy, she herself has pbc and had a baby 9 years after being diagnoised, she said you have to feel free to email her and she can tell you how she was, her name is victoria and her email is :

[e-mail], she said you can email her anytime, Ive also told her about this site and I think she is going to join, I also know another lady who is nearly 18 weeks pregnant just now and had pbc, she also may respond to your enquiries.

catherine

[itchyandscratchy]

hi lisa, i was diagnosed when my youngest child was 2, however I believe I had pbc before my children were born.

In 4 years I had 5 pregnancys,1 miscarriage, 2 labours, 2 sections and a funeral (lost 1 daughter as still born)

I found pregnancy, despite the dramas, went well. I was tired and itched but generally things were ok. however I felt incredibly tired after the youngest child was born.

as they have grown (ages now range 5-9) i have found that tiredness and ill health has had an impact on what I can offer and do for the children which leaves me feeling guity. They all have been helping with chores such as hoovering, putting away washing etc since the youngest was 3 and allthough this upsets me, they have grown up helping and just get on with it. I have worried about the risks of my children suffering with autoimmune problems in the future but then non of us know whats instore for us, i have come from a family where there are many autoimmune disorders.

They appear happy and well balanced. I have been lucky in that I have family and friends who are supportive, I try to make sure all the children have time out of the house and make the most of any quality family times. Its a very different situation to go into pregnacy knowing you are unwell, so difficult for me to comment, but Lisa, we are all happy.

PBC is horrible and can be desperetly difficult to live with, no doubt about that! but I have decided that it is something I am going to learn to live with and fight against, I have needed to make adjustments and except support but its not going to ruin mine or my familys life!

I love being a mom, if my husband didnt turn pale and start shaking at the very thought, I would have more children.

Take time to discuss your feelings and worries with family, friends and health providers.I wish you well.x

[Jtxx]

I also come from a family with lots off family members with various autoimmune conditions. The experts say that PBC is not hereditary but it is genetic. I can only speak from experience. My mum had PBC and her older sister also has it. Children are a blessing and there are lots of factors to consider. Get all

the relevant information you need for the specialist and doctor. In the end it is you and your hubbies decision. Good luck. X

[Juamcc in reply to Jtxx]

The mitochondria which must be included in the diagnosis of autoimmune PBC can only come from the mother.

[TracyLou]

Hi Lisa

I had my last child in Denmark before I was diagnosed with PBC. Although I was ill they didn't think it necessary to do a C section.

It has been really hard work with 3 children but over the years my partner has become more helpful. It has taken us a long time to adjust to my illness. If I can't manage to do something because im tired I try not to worry too much. Stress just made me more tired. I don't work and I am a carer for my middle child who has autism. He goes to school like the other two.

I am really happy being a mum and wouldn't have it any other way. Like you I tend to forgot about the PBC and get on with my life.

Tracy

[Lisa30]

Thank you to every one of you who have taken the time out to respond to my question and share your own personally experiances, i am very grateful. Having read through all of your emails and much discussion with my husband, we have decided to wait for a while. As one of you said its very different going into pregnancy knowing you are unwell. I only got diagnosed In October 2011 after 18months of tests which are still on going, i feel like the hospital is my second home and therefore i think we need to adapt to our changes and enjoy our beautiful 2 year old daughter that we have been blessed with, and if and when the time is right i want to make sure we have all the facts before going ahead. . Thank you again ladies xx

[itchyandscratchy]

I wish you and your family well.Tough decisions.Take care of yourselves. x

[irina73]

I would tell you to make sure that it was PBC you had when your pregnancies. I have a condition called cholesthesys of pregnancy, and has pretty much the same symptoms as PBC. Actually, having two babies, and they were both delivered at 36 weeks, with that condition was what caused the PBC. Cholesthesys of pregnancy is a auto-inmune condition that attacks the liver and it improves after delivery. I am now waiting for a liver transplant, I am in final stage of PBC and I am 10 weeks pregnant. Drs want me to consider an interruption due to the high risk and the extremely low platelet count. Can someone please put some sense into me???? I do not know what to do, and because of my condition during pregnancy things are bound to get worse...

[Juamcc in reply to irina73]

I would stop the pregnancy because you need to live and the other children need a parent.