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Author Topic: Thal Minor Pregnancy Posts  (Read 156128 times)
Narendra
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« on: August 14, 2009, 05:25:00 PM »

I have been reading a lot of members coming to the site and asking questions related to Thal Minor and Pregnancy. While members can use the thalpal search engine to search what's already on the site, I understand that is a difficult task as some members are new and might NOT know how to navigate and find all the valuable information on this site related to pregnancy.

I have used the search engine and got all the related posts here :

Sorry, there are some sad posts here, but we want to have them all for members to read and prepare.

Thal Minor and Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=2619.0

Pregnancy with Thal Minor
http://www.thalassemiapatientsandfriends.com/index.php?topic=2823.0

Questions about Thal minor/pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=1189.0

HbC Trait and Splenomegaly in 3rd Trimester Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=549.0

2 weeks from due date (Blood Transfusion during Pregnancy)
http://www.thalassemiapatientsandfriends.com/index.php?topic=3028.0

Pregnancy Complications (relatd to HELLP/Preeclampsia symptoms)
http://www.thalassemiapatientsandfriends.com/index.php?topic=1399.0

Lost a baby during pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=2866.0

Low hb during pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=2700.0

Beta Thal. Minor and iron supplementation in pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=375.0

Hematologist Recommending Transfusion during Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=1627.0

Hypercoagulable state (blood clotting disorder) during pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=109.0
Note in this post :
Quote
I am Thal Minor and experienced Intrauterine Growth restriction in both pregnancies, my daughters due to calcification of the placenta causing oligohydramnios , and my son due to subchrionic hemhorraging and complications of my Thal.  Sometimes babies when faced with little to no nutrition coming from the placenta will suffer too much damage in the early trimesters to carry on.


Pregnant with Thal Minor
http://www.thalassemiapatientsandfriends.com/index.php?topic=1914.0

Thal minor and pregnant and having issues blood pressure, shortness of breath
http://www.thalassemiapatientsandfriends.com/index.php?topic=1736.0

Thal Minor and Pregancy - note member - drievermom had to take transfusion
http://www.thalassemiapatientsandfriends.com/index.php?topic=416.0

Supplements during Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=394.0

B-Thal minor Pregnant w/Twins & High Iron
http://www.thalassemiapatientsandfriends.com/index.php?topic=1623.0

Iron Supplements During Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=1433.0

Pregnant with Thal minor (Low Hemoglobin)
http://www.thalassemiapatientsandfriends.com/index.php?topic=1756.0

Spleen and Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=707.0

Thal Minor and Sickle gene
http://www.thalassemiapatientsandfriends.com/index.php?topic=722.0

Thal Minor Alpha + Thal Minor Beta plans to have another child
http://www.thalassemiapatientsandfriends.com/index.php?topic=1082.0

Couple with Thal alpha and Thal beta trait Note: Varition in alpha gene
http://www.thalassemiapatientsandfriends.com/index.php?topic=1337.0

Pregnant, iron dropping
http://www.thalassemiapatientsandfriends.com/index.php?topic=1216.0

Pregnant and Low HB
http://www.thalassemiapatientsandfriends.com/index.php?topic=3187.0

Proactive member got herself help - Pregnancy and Transfusion
http://www.thalassemiapatientsandfriends.com/index.php/topic,4644.0.html
« Last Edit: November 26, 2012, 01:51:09 PM by Narendra » Logged
Manal
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« Reply #1 on: August 14, 2009, 07:32:59 PM »

Thanks a lot Narendra for you effort and time. It is very helpful

manal
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Andy Battaglia
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« Reply #2 on: August 14, 2009, 09:01:13 PM »

Great job, Narendra. I have stickied this thread so that it will be easy to find in this category.
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Andy

All we are saying is give thals a chance.
Sunayna
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« Reply #3 on: September 07, 2009, 06:55:56 AM »

Hello Narendra,

Thank you so much, this is very useful.

Sunayna x
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Sharmin
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Little A


« Reply #4 on: September 07, 2009, 10:04:04 AM »

Narendra,

Thank you for your hard work this will be very helpful! 

Sharmin
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Sharmin
michelle2124
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« Reply #5 on: December 18, 2009, 10:57:27 AM »

I have read through many of posts regarding thal minor and pregnancy, however, I was hoping to get some more information regarding what the harm may be to the baby in this situation. 

I am 24 weeks pregnant and my last hb count at 18 weeks was 8.2. My doctor has said that if I go below 8 he would recommend blood transfusions.  I am not certain that I want to have blood transfusions at this point.  If it just means that I have to deal with the symptoms, I am ok with that.  My main concern is the baby.  What risks are there for the baby if I do not get blood tranfusions?

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Andy Battaglia
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« Reply #6 on: December 18, 2009, 11:38:29 AM »

Hi Michelle,

Please see http://adam.about.com/reports/000057_1.htm

Quote
Anemia and the Pregnant Woman

Iron deficiency occurs in 20% of pregnant women in developed countries. Even worse, 50% or more of women in nonindustrialized nations become iron deficient and between 30% and 50% are deficient in folic acid. Severe anemia is associated with a higher mortality rate among pregnant women. Mild to moderate anemia, however, does not pose any elevated risk.

Pregnancy increases the risk for anemia in different ways:

    * Pregnancy increases the body's demand for folic acid and, therefore, poses a risk for deficiencies and an increased risk for megaloblastic anemia. Low levels of folate during pregnancy increase the risk of neural tube defects in newborns.
    * Pregnancy also increases the demand for iron, thus posing a risk for iron deficiency anemia. Pregnant or nursing women require 30 mg of iron per day. Maternal iron deficiency anemia is associated with increased weight or size of the placenta, a condition that may pose a risk for later high blood pressure in the offspring. Pregnant women with low hemoglobin levels (the iron-bearing component in the blood) have an elevated risk for pre-term or low birth weight infants. (However, iron supplements do not appear to have any effect on these complications.)
    * Pregnancy is also associated with fluid retention, which in turn may produce high volumes of plasma (the fluid component of blood). This can dilute red blood cells, which may lead to anemia.
    * After delivery, heavy bleeding, which occurs in 5% to 10% of women who have given birth, can cause symptoms of anemia.

Diagnosing of Iron Deficiency During Pregnancy

A diagnosis of iron deficiency is problematic in pregnant women. The standard test is a measurement of ferritin levels, which are low in most people with iron deficiency. Pregnant women, however, may have high ferritin blood levels into their third trimester but still be iron deficient. A newer test that measures a factor called serum transferrin receptor may prove to be a useful way of diagnosing iron deficiency in women.

Preventing Anemia in Pregnant Women

Iron Supplements. For the past 40 years, iron supplements have been recommended for all pregnant women. This practice has been challenged recently, however. There is no clear-cut evidence that the mild iron deficiency in most pregnant women experience is harmful. In addition, iron supplement causes gastrointestinal side effects and may not be completely harmless. On the other hand, a 2003 study reported that women who took iron supplements had children with higher birth weights than those who received placebo. (Iron pills had no affect on anemia, however.)

Some experts suggest iron supplements for the following women:

    * All pregnant women whose hemoglobin levels are less than 11 g/dl, and
    * Pregnant women whose serum ferritin levels are low beginning in their 20th to 24th weeks of pregnancy.

Vitamin Supplements. Women who are trying to conceive, who are pregnant, and who are breastfeeding should take 400 mcg of folic acid a day. (They should be sure this is folic acid and not folate, which is the natural form -- but supplements at the same dose are half as potent.)

Pregnant and nursing women who are vegetarians should be sure to have supplements of folic acid and other B vitamins as well, since many of these nutrients are found primarily in animal products. Of particularly importance, vitamin B12 deficiencies during pregnancy can also produce anemia in both mother and child.

Diets Rich in Vitamin C. Eating foods rich in vitamin C can help absorb iron.

Because this involves thal minor, some adjustments to this advise are necessary. The dose of folic acid should be 2000-5000 mcg daily. If iron deficiency is demonstrated by iron studies, iron supplements should be taken. I agree that there is no need for transfusion until the Hb is below 8, unless you are experience constant tiredness and fatigue. If you are having a problems with extreme fatigue, then transfusion would be indicated now. The Hb is a bit misleading during pregnancy because the total plasma volume increases, resulting in a relatively lower HB, even though the true Hb has not dropped as low as is measured, so the physical condition of the mom has to be taken into account. One other thing I always recommend is to take 400 IU natural vitamin E daily. This is very important in helping to prevent miscarriages in thals, who are prone to clotting problems between the uterus and placenta.
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Andy

All we are saying is give thals a chance.
deb
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« Reply #7 on: December 20, 2009, 10:44:39 PM »

Hello all. It took me 2 or so weeks to join after reading the site before registering and posting; finally a place to understand and be understood. It made my cry, but wanted to join once I composed myself. 

I'm ßTM, 51 with a ßTM 13 yo daughter. Wow. And thank you for these indexed posts on thal pregs. Obviously I'm past my repro years now (I'm now perimenopausal, actually), but could relate to preg symptoms many have described and wanted to share my experiences with you new(er) moms and dads. Aside from the symptoms I've seen posted here of anemia, shortness of breath, fatigue—may I toss in a couple more symptoms/scenarios I experienced, for documentation purposes?:
• Cardiomyopathy (heart wall dysfunction causing incompetent pumping; not recognized til years later) couldn't climb DOWN stairs; extreme dizziness, shortness of breath, fatigue. Had Ejection Fraction of 30.
• extreme edema (started in 2nd month) massive to the point of deformity and put on bedrest; displacement caused back problems and could no longer walk (slipped disc and sciatica nerve damage). Had to remain hospitalized my 9th month to monitor me/my baby
• early false labor, preeclampsia, excessive bleeding at (normal) delivery
• my ßTM baby had to be "returned for repairs" after 2 days due to HIGH RBC that weren't oxygenating properly, becoming cyanotic, plus brachycardia (slow HB)
• I should have had a transfusion; was severely anemic and dehydrated; could barely nurse (only 1 month).

I was so happy with my husband and pregnancy, I willed myself thru it all. No doctor was willing to venture into thal theories, everything was treated separately. After reading all your posts and this forum, I shake my head and well-up when I think of how so much could have been managed differently or prevented altogether.

My overall health has declined following this one pregnancy and was told not to have more (my one single regret).
Following exposure to Preschool germs, with lowered resistance I developed asthmatic bronchitis, now COPD. Because I have started swelling again, I will be undergoing tests this week to determine returning Cardiomyopathy and possible Pulmonary Hypertension. So, I ask: Is there anyone with any experience with ßTM correlated with Pulmonary Hypertension? With cyclic edema in left lower extremity (leg), then both? I would greatly appreciate any and all input. Thank you.

I venture to say that all these conditions have one basic root. When cells cannot oxygenate and cycle properly (sorry for lack of med terms/details), all kinds of systems incompetence and failure precipitate insidiously. Doctors only treat symptoms, and only as separate because after all, ßTM is asymptomatic and any idiopathic condition might just be in your head. 
In fact, I was once told prior to my dx of cardiomyopathy that I had Anxiety (which imo is lazy-speak for doctors who are arrogant or unskilled/unmotivated diagnosticians. Those are fighting words to any competent female who knows her body and is looking out for the best interests of her baby.

I'm winding this up with the topic to say BEWARE and don't let any doctor, esp a gyno or hemo doctor tell you that ßTM only has mild anemia symptoms, if any. I urge new moms/dads to find another doctor who cares enough to do the right thing by you and your baby. Pregnancy with ßTM can have serious, long-range ramifications—and the fallout is so regrettable when it is so PREVENTABLE.

Thank you for this forum. This alone has provided some vindication of medical suspicions. If my experiences help—lovely! ...if only for prevention and awareness. Good luck to you all wanting kids! Parenthood is a joy and children a blessing... no matter what.
 
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Zaini
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« Reply #8 on: December 21, 2009, 03:19:20 AM »

Thank You so much Deb  for this detailed post,it will definitely help lots and lots of new BTM moms and people who are recently diagnosed with BTM,

.

Zaini.
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tsurayya
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« Reply #9 on: January 03, 2010, 02:30:22 AM »

Hi. Nice to meet you all. I am glad to found this site. I have thalassemia Minor since I was born. My HB is always below 9. Usually 8 or something.

 I am now 6weeks pregnant. Last time before my test pack (Dec 14); my HB was 7.5 and Hematocrit was 25.5 (low). My Fe was 149 and Ferritin was 336 (High).

I met my hematologist already.  He said I dont need to worry as long as my HB bigger than 6. As if its 6, transfusion is a must. I am Indonesian and I am living in Japan now, and I believe the doctor here doesnt have much experience with Thalassemia.

I just worried about my pregnancy. Now I am taking 800mg Folic Acid since 4 weeks of my pregnancy. I know it was a bit late, but I didnt realize that. FYI, I am pregnant with IVF (in vitro fertilization). I had MC 2 years ago.

My questions are:
1. What should I do with HB (perhaps now lower than 8) during my pregnancy? I took bedrest for   2weeks already, but from tomorrow I have to go to my university.

2. Is there any relation between Thalassemia Minor and preganancy? I  am alwasy wondering that its hard for me to pregnant because I had this thalassemia.

thank you very much for you kindly help and answers.


Regards

-Aya-
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Andy Battaglia
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« Reply #10 on: January 03, 2010, 12:58:37 PM »

Hi Aya,

I hope you have read some of the posts concerning thalassemia minor pregnancies that you can find in this thread. There is much information here and as you read, you will learn that many thal minors do experience problems during pregnancy, especially miscarriages. Of course, if you mention this to your doctor he may tell you that this evidence is anecdotal and not scientific, but I will insist that it is no coincidence that so many thal minor women experience the same problems during pregnancy. We have heard from many dozens of thal minor women about problems during pregnancy and miscarriage is common, and many women have had multiple miscarriages. You will find very little acknowledgment of this among medical professionals, but frankly, we have far more contact with thal minors than most medical professionals will encounter in a lifetime.

I don't agree with allowing the hemoglobin level to drop to 6 during pregnancy and many doctors will transfuse a woman once her Hb drops below 8. A physical analysis of the woman should also be utilized and transfusion done on a case by case basis depending on the health of each woman. A woman forced to bed rest by low Hb should be transfused in my opinion.

Normally, thal minor women do not have trouble getting pregnant but many do have problems having successful pregnancies. I believe this can be minimized if doctors are instructed to watch for any signs of clotting disorders during the pregnancy. When this is found, the solution is often as simple as taking one baby aspirin daily during the pregnancy.
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All we are saying is give thals a chance.
SophieBee
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« Reply #11 on: January 24, 2010, 04:47:38 PM »

I would like to share my pregnancy story if I may. My baby is currently 4.5 months old and strong and healthy. Sadly this wasn't the case at his birth... I am 29 with Thal Minor. Throughout my pregnany no special attention was paid to my condition, with all the docs and obs saying Thal Minor had no bearing on my pregnancy, low hg levels and iron deficiency. At week 30 my ankles blew up like balloons. Ob said this was "normal". Blood pressure and protein in urine went sky high, hg levels were at rock bottom. I was told to rest. At week 35 my husband had to rush me to the closest hospital (1.5 hours away from our home) for what turned out to be a torn placenta. By the time we reached the hospital 50% had torn away and my son was born by emergency c sec flatlined and without breath. The docs still won't admit that this had anything to do with Thal minor, however I am not so sure. Sadly, I was booked to see a haematologist just 2 days after he was born.

My advice to anyone going through a first time pregnancy is to just be extra careful and don't doubt yourself... no one knows your body better than you and doctors just don't know enough about Thal to have any idea what to do.
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Andy Battaglia
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« Reply #12 on: January 24, 2010, 05:21:28 PM »

Hi Sophie,

Thanks for your story and your advice. We have heard many stories about problems in thal minor pregnancy and problems with the placenta and the flow of blood from the uterus to the placenta are common. I have even taken some flack at a health forum from a nurse practitioner who criticized the advice I give to thal minor women who are pregnant. It is quite obvious from the sheer numbers of women who have shared their story, that things can go wrong during pregnancy in thal minors, but the nurse's attitude was that because I was also drawing conclusions based on research done with major and intermedia, that I was comparing apples to oranges. When I make a statement that it is well established that a hypercoagulable state in thal major and intermedia and then say that from the evidence we've seen, it is very likely that this same problem exists in many thal minors during pregnancy, it is not comparing apples to oranges. It is making an observation that the same exact problems that sometimes surface in thal major pregnancies also surface in thal minor and it is likely there is a similar explanation to what happens in thal majors, I am making a hypothesis based on the facts that have been presented. I found her statement to be utter nonsense. Thalassemia is thalassemia and at all levels there are known problems. To dismiss this because the administrator is not a doctor is both foolish and a great disservice to whoever that nurse was advising. Somehow, in this nurse's mind, it is better to ignore the experiences that have been reported here, and thus give false assurances to a patient, rather than to share real stories about real experiences. I have to disagree because it's not about the egos of thal site administrators and nurse practitioners who answer questions at "health" forums. It is about the health and safety of the mother and child and that is ALL it should be about. False reassurances based on nothing more than one's ego can be downright dangerous and I feel a nurse that does this is in the wrong occupation. Unfortunately, this "I know better because I was trained" attitude is prevalent among those in the medical profession who think that medical knowledge is reserved to some medical cult. It is not and with the internet, we all have access to volumes of information that can teach us and is some cases, teach us more than the average doctor or nurse will know. I do know that I know far more about thalassemia than most doctors and nurses on earth and it's not bragging. It is a fact and it is through my own efforts that I have this knowledge. Challenging one who does not have the facts is one thing but challenging one because he didn't go to med school is just ego driven foolishness. We need more from the people responsible for our health and safety and we will continue to advise women what they should be aware of when pregnant. Most minors will have healthy, event-free pregnancies. But a substantial number will have issues and we would be remiss to say nothing.

Sophie, I am so happy to hear your child is healthy. It is sad that you had to experience what you did and we will continue to supply as much information about pregnancy in thal minors, as we can, so that more moms can be spared problems that include loss of their child during the pregnancy. Your story tells us once again that we have to ignore the criticism and try to provide the information that can help women have successful pregnancies.
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Andy

All we are saying is give thals a chance.
Sproutsmama
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« Reply #13 on: January 26, 2010, 09:46:10 AM »

Hi Andy,

Thank you for your frank discussion on this issue.  It gives me the confidence to 'push' the issue with my doctors should I be met with resistance in looking more closely at my Thal in light of my miscarriages.

As an update to my situation, last week we had our first visit to a fertility clinic here in Ottawa.  Our doctor is keen to see my blood work results from the past year.  As it also happens, in December I underwent testing at the Thrombosis Clinic here and so far I'm told that the results look okay (I guess no evidence of clotting) but one test result is still not back yet, so we'll see what becomes of that one.  I'll still be seeing a hematologist in the next while and will be undergoing both blood and other testing with the doctor at the fertility clinic.  This journey is quite involved, but hopefully we'll get some answers.

I would like to know, however, what women with thal major do when pregnant?  When they are able to successfully carry a baby to term, what treatment have they undergone while pregnant?

I am taking extra folic acid now (3 mgs daily), and I do try to take B12, but it often leaves me feeling quite nauseated.  What else can I do to fortify myself for the next pregnancy attempt if the results of all the fertility/blood testing come back and show that there 'appears' to be nothing wrong?  After all, I have had three healthy children, so something can work, but perhaps now at my age (40) with the combination of Thal, I need a major boost or need to do what thal major women do......any further insight is greatly appreciated as always.

Take care everyone - and again, thank goodness for this site!

Elizabeth
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Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #14 on: January 26, 2010, 06:49:51 PM »

Elizabeth,

What form of B-12 are you using? The sublingual kind that you melt under your tongue is usually a very tiny sweet pill that is easy to use. Your folic acid dose is fine, but I would suggest a good multi-vitamin (iron optional based on your true iron status) and also natural vitamin E. Look for mixed tocopherols. 400 IU daily is a good dose and quite safe. (I have taken that dose daily for 35 years). It has many benefits and is a mild blood thinner which makes clotting issues less likely and should help promote the normal flow of blood.

I think much will depend on the Hb level you are able to maintain through the pregnancy. Some minors do require transfusions if the Hb gets down below 8. With your age, I am sure the pregnancy will be closely monitored which should help pick up on any problem if anything does develop. The thrombosis test result is reassuring and you may want to have that repeated later in the pregnancy.

Any of the moms have any tips for having a healthy pregnancy?
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Andy

All we are saying is give thals a chance.
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