Aplastic Anemia and Pregnancy

[Anna Parton]

Hello,

My name is Anna, I was diagnosed with Aplastic Anemia at the age of 9, in 2001. I did a round of cyclosporin, chemotherapy, radiation and a bone marrow transplant. I was on and off and the doctors didn't think that my BMT was successful so they started me on the horse serum for about a year. Eventually my body ended up rejecting my brothers bone marrow and my bone marrow came back healthy as can be. I was declared to be in remission in 2008. I am now 20 years old, married and pregnant with my first child.

I was doing some research to see if it can be passed to my child and came across research that pregnancy can cause a relapse in aplastic anemia. Have any of you been through a relapse caused by pregnancy or passed it down to your children/child?

[squirrellypoo]

First of all, congratulations! And second, WOW - it's incredibly rare for women to become pregnant after a BMT, the strength of chemo and radiation almost always creates early menopause.

AA/MDS are not hereditary so there's no chance of passing it onto your baby. I'll let others more knowledgeable address the risk of relapse to yourself during pregnancy...

[Anna Parton]

Thank you so much!! It's a true blessing that I got pregnant. I was told that I may never even get my period and won't ever be able to have kids. My husband and I were pleasantly surprised when we found out.

I have my first appointment tomorrow and have been so worried about relapsing. I've been trying so hard not to think about it but it's been hard. Every symptom I have, I freak out and my husband tells me to stop worrying, that it's bad for the baby.

[mscrzy1]

Congratulations!! You will be a ray of hope for many other women! I didn't do the BMT, but had ATG. Since then, I have carried both of my children to term and delivered them both naturally without a problem...no relapse. Maybe that can be a bit of a relief for you and your anxieties. As for your question about AA being genetic. There is a type of AA called Fanconi AA (I believe) that is genetic, but most AA can not be passed down from mother to child, from what I understand. Enjoy your pregnancy!!

[phoenixarko]

Hi Anna, my heartfelt best wishes to you for the ongoing pregnancy. Today we found that my wife is pregnant (she missed her periods 2 days back). She's still on Cyclosporine as her haemoglobin has not yet reached a good level. We called up her doctor and she suggested to call off the pregnancy, citing chances of relapse. Well it's early days still, and I am not going to give up so easily, unless there are scares about her health. We'll keep you in our prayers. Please keep us informed....

[safrank]

Hi! My name is Stephanie. I have had AA for 11 years now. I just found out, about 3 months ago, that I may not want to get pregnant because of AA and the risks it has. I was told there is a 20% change the disease can relapse during pregnancy. I was completely devastated when I heard this. I have seen two doctors who have not been able to give me much information on pregnancy and AA. I have also been doing a lot of research to find success stories, but have not been able to find too many stories that are very encouraging. I would love to hear from anyone who has or is going through this. Any advice would be great.

Thank you so much!!

[jaluluson]

Originally Posted by mscrzy1

Congratulations!! You will be a ray of hope for many other women! I didn't do the BMT, but had ATG. Since then, I have carried both of my children to term and delivered them both naturally without a problem...no relapse. Maybe that can be a bit of a relief for you and your anxieties. As for your question about AA being genetic. There is a type of AA called Fanconi AA (I believe) that is genetic, but most AA can not be passed down from mother to child, from what I understand. Enjoy your pregnancy!!

Hi i am very interested in your story. i am now 26 years old. I found out i had aplastic anemia two years ago. I am very worrying about whether i can be a survivor of getting pregnancy. So you were saying you had your babies naturally delivered without a problem which makes me see the hope but i know everybody's case is so different. Therefore, just wondering whether we can talk about it.

thanks

[amira85]

hello all
excuse my English
I am also suffering from medullary aplasia, i am 27, and I really want to have a baby, but my doctor said that is dangerous for me, so I wonder if it is possible to fall pregnant while being sick;
for now I take androgenic treatment but it does not work and I think we're past a bone marrow transplant, I fear I really want to get pregnant, I would have testimonials of people who have managed to malgres disease be pregnant, thank you

[Neil Cuadra]

amira85,

Search these forums and you'll find additional discussions of pregnancy for aplastic anemia patients, including patients making the decision you are making. I'm not sure if the details apply equally well to medullary aplasia.

A doctor's role is to take care of your health, so it's their duty to tell you about the risks of pregnancy and childbirth. For example, about 1/5 of pregnant aplastic anemia patients experience a relapse. There is also an increased risk for the child. At a minimum you'd need to be on a very close and constant watch for signs of trouble.

This is a decision about your life, not your disease, so ultimately only you and your partner can make the choice. The Aplastic Anemia & MDS International Foundation advises people in your situation to rely on both a specialist in your disease and an obstetrician who specializes in high-risk cases. You'd want their expertise throughout a pregnancy and delivery.

[amira85]

Originally Posted by Neil Cuadra

amira85,

Search these forums and you'll find additional discussions of pregnancy for aplastic anemia patients, including patients making the decision you are making. I'm not sure if the details apply equally well to medullary aplasia.

A doctor's role is to take care of your health, so it's their duty to tell you about the risks of pregnancy and childbirth. For example, about 1/5 of pregnant aplastic anemia patients experience a relapse. There is also an increased risk for the child. At a minimum you'd need to be on a very close and constant watch for signs of trouble.

This is a decision about your life, not your disease, so ultimately only you and your partner can make the choice. The Aplastic Anemia & MDS International Foundation advises people in your situation to rely on both a specialist in your disease and an obstetrician who specializes in high-risk cases. You'd want their expertise throughout a pregnancy and delivery.

thank you

[Survivorgurl21]

Originally Posted by mscrzy1

Congratulations!! You will be a ray of hope for many other women! I didn't do the BMT, but had ATG. Since then, I have carried both of my children to term and delivered them both naturally without a problem...no relapse. Maybe that can be a bit of a relief for you and your anxieties. As for your question about AA being genetic. There is a type of AA called Fanconi AA (I believe) that is genetic, but most AA can not be passed down from mother to child, from what I understand. Enjoy your pregnancy!!

You just gave me an amazing amount of hope!! I'm 22 and at age 10 I was diagnosed with SAA and treated with ATG. Iv been in remission since '07 and recently found out I'm pregnant. Now I'm 15 weeks and have been worrying about a possible relapse or passing it down to my little one. It was a miracle that I'm pregnant and so far so good! Although tonight I Have paticiai on my face around my eyes :/ but thank you so much for the hope!!!

[Mai]

Hello everyone I'm Mai, turning 29 y/o next month Im planning to get pregnant next year but my doctor said its too risky. Diagnosed AA last 2011 came back last 2012 Well its all started when i got my first period always heavy flow and never stop on bleeding,they did BT, all test are down, period never stops, NO RADIATION, CHEMO, TRANSPLANT, just took cyclosphorine and steroids and now I feel better and not taking any medication.

PL-143
HGB- 12.4
WBC-5.3

Should i follow my doctor to wait 1 more year to get pregnant? Im 31 that time

THANKS

[Neil Cuadra]

Mai,

I wouldn't assume that your doctor's advice is the last word on this. It's a very personal decision that you ultimately have to make yourself. Doctors are naturally going to favor a choice that protects your health, but this is an issue that affects your life as a whole, not just your health.

Yes, pregnancy has higher risks when you've had aplastic anemia, but there are also higher risks when you're older while carrying a child. There is no perfect solution.

You've gotten input from your doctor. I'd suggest learning what you can from a fertility specialist next, asking them to talk to your doctor directly to understand your situation. You can look through these forums for pregnancy discussions as well, and talk to the caring experts at the Aplastic Anemia & MDS International Foundation (see their Patient Educator and Peer Support pages). Then you can talk it over with your family.

[Mai]

Originally Posted by Neil Cuadra

Mai,

I wouldn't assume that your doctor's advice is the last word on this. It's a very personal decision that you ultimately have to make yourself. Doctors are naturally going to favor a choice that protects your health, but this is an issue that affects your life as a whole, not just your health.

Yes, pregnancy has higher risks when you've had aplastic anemia, but there are also higher risks when you're older while carrying a child. There is no perfect solution.

You've gotten input from your doctor. I'd suggest learning what you can from a fertility specialist next, asking them to talk to your doctor directly to understand your situation. You can look through these forums for pregnancy discussions as well, and talk to the caring experts at the Aplastic Anemia & MDS International Foundation (see their Patient Educator and Peer Support pages). Then you can talk it over with your family.

Thanks Neil because im getting married next year and planning to get pregnant right away..

[Dipti K]

Originally Posted by phoenixarko

Hi Anna, my heartfelt best wishes to you for the ongoing pregnancy. Today we found that my wife is pregnant (she missed her periods 2 days back). She's still on Cyclosporine as her haemoglobin has not yet reached a good level. We called up her doctor and she suggested to call off the pregnancy, citing chances of relapse. Well it's early days still, and I am not going to give up so easily, unless there are scares about her health. We'll keep you in our prayers. Please keep us informed....

It is a great news that You are Pregnent, but my question is still have AA and you become Pregnent or In Pregnancy AA relapse.

[Dipti K]

Originally Posted by safrank

Hi! My name is Stephanie. I have had AA for 11 years now. I just found out, about 3 months ago, that I may not want to get pregnant because of AA and the risks it has. I was told there is a 20% change the disease can relapse during pregnancy. I was completely devastated when I heard this. I have seen two doctors who have not been able to give me much information on pregnancy and AA. I have also been doing a lot of research to find success stories, but have not been able to find too many stories that are very encouraging. I would love to hear from anyone who has or is going through this. Any advice would be great.

Thank you so much!!

My question is currently you have AA or not?

[Dipti K]

When i was 9 years old, Aplastic anemia happens to me. I was totally cured by Tata memorial hospial. Although i was just of 9 years in 1990, but i remember my treatment is done by some doctors names Dr. Padhak and Dr. Aiyer. Treatment was done by injections, i don't know name of injections, but today from internet i came to know this was ATG treatment. Treatment completed and my parents bring me back to my home but still my blood counts were not began to develop. But after 1 or 2 months blood counts starts develop by bone marrow and i was totally cured. Once again my BMA done it was normal at that time i was 10 years old. After that i never faced any problem related to my blood count. My CBC was done in 2010 that was perfectly normal TLC 8200 and Platelets 170000 when i was 28 years old. But in 2015 i gone to Gynologist because i can't concieve now my CBC test happen and i found Hb 7.8, TLC 2800 and Platelets 160000 At that time i was 32 years old. But now in 2015 i was shocked because i don't feel any problems in my body even with this CBC. I came to now my blood counts are normally less because i gone to gynee for some other reason.

Then one physician suggests to test B12, folate, but all were normal. Now doctor done BMA(Bone Marrow Analysis) and result is 30% cellularity. I ask to doctor is it again Aplastic Anemia after 24 years? Doctor answered "No" because normal cellularity is 30% to 70%, but you are still in range. She suggested some iron, multivitamins and folic acid for two or three months and CBC every month. I took medicines only one month after that every month CBC result was same TLC 2600 or 2800 and Plateletes always between 1.4 to 1.6 laks. Again in 2016 i gone to same physian to ask what to do. Then she suggested if these are stable not fallen, there is not a problem but you can consult with Hemotology.

Now after hearing all story and seeing all tests results with BMA. Hemotology doctor suggests same medicines and told sometimes Aplastic Anemia comes back but in your case time gap is around 24 years and still your blood counts are stable not falling, just take these medicines 2 or 3 months and test CBC in every 1 or 2 months you are safe, it is not Apalastic anemia.

But Now my question is Can i go for pregnancy? How much percent is chances of relapse AA in my case.