Thal minor pregnancy experience

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Thal minor pregnancy experience
« on: October 10, 2012, 12:06:56 AM »
Hello!

I am new to this site.  I was so happy when I found it because i felt like there are finally people that understand.  I am 27 weeks pregnant and it is my first pregnancy.  Carrying Thalassemia has made this pregnancy challenging to say the least.  I have already needed three blood transfusions because my hemoglobin keeps dropping.  I have been reading old posts and i have noticed there are a lot of scared mothers to be out there.  I know the feeling.  Lucky for me my doctors have been great up until a certain point.  I thought if i could share my own experiences it might help to ease the fears of other pregnant women out there or at least let you all know what to fight for.

Here is my story:
As I said I am 27 weeks pregnant.  I have known my whole life that i have Thal minor because the trait was passed on to me during birth from my mother.  I was also ahead of the game with my pregnancy because my mom needed two transfusions when she was pregnant with me.  The interesting thing is that my mom had a perfectly normal pregnancy with my older sister and she didn't have any problems with her hemoglobin so it is possible to be pregnant with Thal minor and have no problems.   I have not been so lucky.  My first transfusion was very unexpected my levels dropped to 8.1 when i was only 12 weeks pregnant.  I ended up passing out when i was walking to the pool!  Luckily, my OB had already set me up with a hemo and she told the hospital to transfuse me.  My mom was there though and she knew what I needed.  Then again at 20 weeks i became really sick and when the hemo checked my levels they were 8.0.  She ordered another transfusion because at this point in the pregnancy she said the baby could be negatively affected if I dropped below 8.0.  So to all new moms out there I don't care if your doctors think it is no big deal to carry thalassemia if you drop below 8.0 it could affect your baby.  My last transfusion was given to me yesterday.  Being 27 weeks the baby is growing a lot bigger and my levels are only at 8.5 right now. However, they sent me to a high risk doctor after telling me that my levels are not low enough for me to be feeling this bad.  As soon as I stepped into the room the high risk doctor was not interested in my levels based on my color she wanted to know my symptoms when i told her i have been short of breath and dizzy she understood and right away told me that she thought i should go right away for another transfusion regardless of the numbers.  I felt so relieved finally someone was looking at me as an individual and not basing everything on numbers.  I am writing this post to tell you all to fight for your babies and yourselves.  If you don't feel well and your doctor is NOT listening then switch doctors. Being a Thalassemia minor can affect you and your baby.  I have just read so many posts where people seem frustrated and not heard so I thought maybe this information would be helpful.  Maybe there is a high risk group out there for you.  I can tell you they GET it and we are not crazy the symptoms are real and scary, especially when your pregnant!  I hope this helps some of you.   

Re: Thal minor pregnancy experience
« Reply #1 on: October 15, 2012, 11:06:52 AM »
Hi mandm13,  thank you for sharing your experience.  :)

Re: Thal minor pregnancy experience
« Reply #2 on: November 26, 2012, 01:28:20 AM »
It's so good to hear from your experience. I'm 28 weeks now and has been worrying for the past 1 week about my low hb. At the moment it's 11. I've asked to see my ob today to discuss my concerns because no one seems to care thinking that thal minor will not have any affect on bb. No one told me anything about monitoring hb level and needing blood transfusion if it drops too low. I just want to know what to look out for if my hb continues to drop without me knowing. I don't want to wait till my bb is not getting any oxygen from me anymore which is too late. I've already lost a bb at 36 weeks, can't imagine going thru the 2nd time. Hope the ob will be more concern this time and give me the right directions.

Good luck with the rest of your pregnancy and to a healthy baby!

*

Offline Narendra

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Re: Thal minor pregnancy experience
« Reply #3 on: November 26, 2012, 07:49:23 PM »
mandm13 - Good luck with your pregnancy. It is nice to hear someone taking control in their own hands to make sure things work out well. I am going to add your post to the link of Thal Minor pregnancies so that other can benefit.

joenbby - Please look at the posts under Thal Minor Pregnancy at http://www.thalassemiapatientsandfriends.com/index.php/topic,3041.0.html

Re: Thal minor pregnancy experience
« Reply #4 on: September 27, 2013, 12:43:32 PM »
Hello to everybody!

 First of all, I thank you to the administrators for the great job they are doing here. Second, I wish to everybody all the best!

Here is my story: I'm 36 year old and I was diagnosed with beta minor thalassemia a few weeks ago after two miscarriages.
My brother and my mom were also diagnosed recently. After miscarriages I was really down so my doctor prescribed some anti depressants. I lost two pregnancies in less then 6 months.
I'm very grateful for this forum and I just want to ask if somebody knows what can I do in the future to avoid another miscarriage.
My hematologist told me that I am the only person with this disease in her career. I'm living in Czech Republic where this disease in very rare or almost inexistent.

Thank you!

Anna

Re: Thal minor pregnancy experience
« Reply #5 on: June 14, 2018, 09:16:16 PM »
It's so good to hear from your experience. I'm 28 weeks now and has been worrying for the past 1 week about my low hb. At the moment it's 11. I've asked to see my ob today to discuss my concerns because no one seems to care thinking that thal minor will not have any affect on bb. No one told me anything about monitoring hb level and needing blood transfusion if it drops too low. I just want to know what to look out for if my hb continues to drop without me knowing. I don't want to wait till my bb is not getting any oxygen from me anymore which is too late. I've already lost a bb at 36 weeks, can't imagine going thru the 2nd time. Hope the ob will be more concern this time and give me the right directions.

Good luck with the rest of your pregnancy and to a healthy baby!

Hey, sorry to ask but if you're still around - would you mind divulging whether your loss at 36 weeks was due to the low Hb or another reason they were aware of?
Thanks

 

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