THALASSEMIA MOM FROM THE PHILIPPINES!

Hello everyone I am new here!

I was discovered with the genetic blood disorder Thalassemia when I was 20 years old.

I am 24 now and I am 31 weeks pregnant.  I am still under treatment with my Thalassemia and I've been through a lot of precautionary procedures for the baby and me,  but I am grateful that I have a healthy baby boy who will be named Nathan (meaning Gift from God) who is due May 16, 2007. 

On the 30th of this month I will be having another blood transfusion to suffice for my and the baby's growing need of hemoglobin, and I will be having another transfusion prior to his delivery.

My doctor told me that my pregnancy complications may come when I give birth, so I was advised to take the option with the least possible bleeding. So, I am hoping to have a safe Cesarian section delivery this May. I need all your prayers. I want to see my baby grow. :smile

Hi & welcome to the site!
I hope all is well for you & your baby,take care.
May i ask do you have thal minor?

Hello!

My name is Courtenay, and I have two beautiful blessings from God...Karol is 17 mos, and Mychael is 3 mos.  I didn't have any complications with Karol's pregnancy except that my placenta was beginning to calcify causing lower amniotic fluid, and I'm not completely sold that it was caused by my Thal...However during my pregnancy with Mychael, I had a severe hemolytic episode in which my spleen began destroying most of my RBC's, including the healthy ones, and swelled to 19 cms.  I had to be in hospital for 10 days in October, and on very close observation until my delivery, which was scheduled as an early "emergency" cesarean to reduce the amount of my bleeding and risking rupturing my spleen during the stress of natural birth.

The transfusions make you feel a world of better during the pregnancy, and although they had to take my blood 4x a day to monitor the serum ferretin and my blood gases (oxygen levels in your arteries), it was so worth it to meet my little angel.

If you have any other questions, please feel free to PM me or respond.   God bless!

Hi & welcome to the site!
I hope all is well for you & your baby,take care.
May i ask do you have thal minor?

Hello thanks for the warm welcome! 

So far everything is going all right for me and the baby.  Managaeable according to the doctor since my baby is a fighter and I have a jovial disposition and a positive outlook in everything no matter how difficult it could be.

Anyway, I think I am Thal Beta Major, it's in both my parents' genes. I was one of the few lucky people in that condition to have a delayed onset.  It just got worse when I grew older but I had quite a normal childhood except that I have a weak immune system and was very prone to sickness.  My baby is lucky though that his dad has healthy genes. 

Hello everyone I am new here!

I was discovered with the genetic blood disorder Thalassemia when I was 20 years old.

Anyway, I think I am Thal Beta Major, it's in both my parents' genes. I was one of the few lucky people in that condition to have a delayed onset.  It just got worse when I grew older but I had quite a normal childhood except that I have a weak immune system and was very prone to sickness.  My baby is lucky though that his dad has healthy genes. 

Hello,

In your first post you said that your Thal. was discovered when you were 20 years old and in your second post you are saying that you have Thal. Major. Well, that can't be correct as Thal. Majors don't survive without blood transfusions since their early childhood. It is most likely that you have Thal. Intermedia that made you survive all these 20 years without blood transfusions. A proper DNA test will confirm this.

Anyway, it's still better to have Thal. Intermedia than Major. After all you pulled out all these years without the suffering of blood transfusions and Desferal. However, now that you are all grown up and the human body tends to get weak with age, your Thal. Intermedia is taking a toll on your body and you are transfusion dependant. So, things are going to be a bit different now. You must keep your blood levels in check and make sure that your Serum Ferritin does not increase too much and cause trouble with your spleen or liver. Ask your doctor about it.

Apart from that, you will have a great happy life if you keep everything in check and enjoy your beautiful gifts from God.

Take care, Peace!

Wish u all the best for a safe delivery. As Sajid said I think you maybe a thal intermediate. Take care of your health. Your positively thinking and am v gald abt that. 

Dont worry share everthing from with site. We are ur new releations whose there to help u.

Tc.

Hello!

My name is Courtenay, and I have two beautiful blessings from God...Karol is 17 mos, and Mychael is 3 mos.  I didn't have any complications with Karol's pregnancy except that my placenta was beginning to calcify causing lower amniotic fluid, and I'm not completely sold that it was caused by my Thal...However during my pregnancy with Mychael, I had a severe hemolytic episode in which my spleen began destroying most of my RBC's, including the healthy ones, and swelled to 19 cms.  I had to be in hospital for 10 days in October, and on very close observation until my delivery, which was scheduled as an early "emergency" cesarean to reduce the amount of my bleeding and risking rupturing my spleen during the stress of natural birth.

The transfusions make you feel a world of better during the pregnancy, and although they had to take my blood 4x a day to monitor the serum ferretin and my blood gases (oxygen levels in your arteries), it was so worth it to meet my little angel.

If you have any other questions, please feel free to PM me or respond.   God bless!

Hi Courtenay, I am Lei! Thanks for your message and it is quite a relief that there is someone who had been through what I am going through.  

Our only difference though is I was a Thal Beta Major.  My serum ferritin level is quite high, I have hypochromic and microcytic hemoglobin, etc. etc. In fact I was undergoing treatment and was giving a good response with how I was being managed. My doctors had considered me one of the few medical miracles with my Thalassemia condition, because I am making good progress compared to my counterparts.  Actually even with my condition, I managed to live a normal life as a professional and a graduate student.  Only that I was strictly advised by my doctor not to get pregnant while on treatment.  

But I was quite hardheaded and went on having a baby.  I don't regret it though since the little man inside my belly is very much a fighter.  I am just thankful that I passed the first two trimesters of my pregnancy smoothly.  I responded well to the management that the doctors are giving me.  My blood is still hemolytic and I still have spleenomegaly but it's manageable according to my doctor, and it is a miracle that my hemoglobin levels stabilized between 7 to 8 grams.  In fact the transfusions are doing me and the baby a lot of good.  I am also under close monitoring by the doctors as of the present.  My doctors are just quite worried with my upcoming delivery though since Thalassemia patients according to them have different responses.  

As of now, we all just pray and hope for more miracles.

 

Hello,

In your first post you said that your Thal. was discovered when you were 20 years old and in your second post you are saying that you have Thal. Major. Well, that can't be correct as Thal. Majors don't survive without blood transfusions since their early childhood. It is most likely that you have Thal. Intermedia that made you survive all these 20 years without blood transfusions. A proper DNA test will confirm this.

Anyway, it's still better to have Thal. Intermedia than Major. After all you pulled out all these years without the suffering of blood transfusions and Desferal. However, now that you are all grown up and the human body tends to get weak with age, your Thal. Intermedia is taking a toll on your body and you are transfusion dependant. So, things are going to be a bit different now. You must keep your blood levels in check and make sure that your Serum Ferritin does not increase too much and cause trouble with your spleen or liver. Ask your doctor about it.

Apart from that, you will have a great happy life if you keep everything in check and enjoy your beautiful gifts from God.

Take care, Peace!

Thanks for the advice.  I'll be checking that with my hematologist.  Maybe they concluded that because I have shown signs and symptoms of Thal Beta Major.  My ferritin level is quite high and i have spleenomegaly, my blood is hypochrmic and microcytic, etc.etc. that was in my latest medical report from my hematologist prior to my pregnancy.  But if I were confirmed in that condition, it must have been really a miracle that I survived 20 years w/out transfusions.   I would really prefer a lesser kind of Thalassemia if ever, since I have a baby inside that may inherit the gene. I still have my fingers crossed and high hopes for the better.   

Wish u all the best for a safe delivery. As Sajid said I think you maybe a thal intermediate. Take care of your health. Your positively thinking and am v gald abt that. 

Dont worry share everthing from with site. We are ur new releations whose there to help u.

Tc.

Thanks for the warm welcome....  It is really a relief that there are people around who have the same condition as I have.

My condition is rare in the Philippines that some people looked at me like I am some special kind of weird being because I have Thalassemia.  I am an economist and a college instructor so most of my co-workers are not aware of how my condition is.  In fact there was even a time in work that I was treated like I already have lukemia and was discriminated because of it. When I am asked about it people would always give me that "what is that" kind of stare.

I also feel that kind of wondering look whenever I go to my doctor and people ask what is my medical condition why am I visiting a hematologist.  In fact most of the patiens there waiting are usually sick of lukemia or just plain anemia, so whenever I tell them I am also there because I have Thalassemia I am often confronted with raised eyebrows with the questioning look in their eyes.

In fact my parents wouldn't believe the doctors of my condition at first that they decided to have a 2nd and 3rd opinion.  All three doctors have the same conclusions,  but they each have different approaches.  My first doctor placed me in iron treatment which raised my ferritin levels to three times the normal level.  The next doctor placed me in folic acid treatments and regular blood transfusions which is quite heavy on the financial side since blood is an expensive commodity in the Philippines.  The third doctor was more conservative and she stopped my regular blood transfusions and pllaced me in folic acid and controlled iron medication.  My third doctor always says that if my body can adjust to a 5 or 6 gram hemoglobin level then we can do without transfusion. But my third doctor's attitude changed my outlook about my condition.  Actually she gave me the inertia to have a better and lighter look at my condition.

Even literatures about Thalassemia cases in the Philippines is very limited. That is why I was challenged to know more about my conditions.   I really went out of my way doing research about it which I slowly explained to my family and friends, which actually lessened their fears and qualms about accepting me.

And lastly, having this baby in spite of my condition is my way of telling them that I am only "special" in their eyes, but I am very much a normal being like any normal healthy person. 

At least now I am relieved that there are 10,000 more people around the world who have what I have.

Hello Lei,

You might want to discuss your high Serum Ferritin level with your doctor. It's not good to have a high SF level as it can damage your organs. Ask your Doctor about Iron Chelation therapy such as Desferal or Exjade. I think they might put you on it after the birth of you baby.

Try to keep your SF lower than 1,000 ng/ml

Take care, Peace!

Hello Lei,

You might want to discuss your high Serum Ferritin level with your doctor. It's not good to have a high SF level as it can damage your organs. Ask your Doctor about Iron Chelation therapy such as Desferal or Exjade. I think they might put you on it after the birth of you baby.

Try to keep your SF lower than 1,000 ng/ml

Take care, Peace!

Oh no! Now I'm getting a little scared. Will that affect my baby?  Since he receives whatever I receive.  I mean if my ferritin is high and I am on iron medication will the baby absorb that too?

Hi Lei,

No need to worry about high Iron yet. The human Liver can store up to 20 Grams of Iron before it becomes too much for it ans that usually happens if you are on regular monthly transfusions for about 10 years or so. After that point the excess Iron goes to other organs and starts to damage them.

It's hard for Transfusion dependent Thals. to keep the Iron level low and have to be put on chelation therapy. Therefore it is recommended for patients on regular transfusion schedule to keep Iron level lower than 1000 ng/ml because the chelation therapy is slow and most people have compliance problems with it and if SF gets too high it becomes even harder to comply with the treatment.

Your case is quite strange, Iron is never prescribed to Thals. if they already have high SF level. I hope your doctor knows what he is doing by prescribing Iron.

Take care, Peace!

I agree with Sajid on the case of taking iron - it can be very detrimental to a Thal Intermedia or Major...If you have Thal Intermedia and Iron Deficiency Anemia...You might want to see a specialist in a big city to manage your treatment.  Your iron levels should be closely monitored then.

Hello alnahrahmea,

Sorry, I did NOT see this thread earlier and posted it with the other post. I am copying it here, so you get an idea with all the other replies. I am also going to delete the other post i wrote, so it does NOT create confusion

Congrats on the baby and we wish you all the luck for a healthy delivery.

Quote from your other post

In the Philippines Thalassemia is quite rare, so when I was diagnosed to be suffering from it after 3 weeks of hospitalization when I was 20 years old

From what you have written, you are definately NOT a Thalassemia(Major). Thalassemia(Major) patients need to get transfused with blood in their early childhood and cannot survive without it and you made it until 20 years, so it seems more like you have Thalassemia(Intermedia) and you might be able to do well with proper treatment.

Quote from your other post

My second doctor confirmed my Thalassemia condition which he suspected as Beta Thal Major.  Since I was already suffering from spleenomegaly and very high ferritin levels

You might want to drink more Tea to reduce the Iron absorption by the gut after meals. You high ferritin might also need Iron Chelation Therapy, if goes above managable levels(although your doctor should be able to guide you well).

With the way, you are treated, it is a great frustration. You might want to print out details on Thalassemia and give it to your doctor when you visit them next time, so that they can re-think your Iron Medication.

From:- http://sickle.bwh.harvard.edu/thaliron.html

Thalassemia and iron metabolism are closely linked. Iron deficiency and mild forms of thalassemia (e.g., thalassemia trait) are often confused. Both are associated with mild to moderate anemia and microcytosis (small red cells). At the other end of the spectrum, severe forms of thalassemia frequently produce iron overload. Excess iron accumulates due to enhanced iron absorption produced by thalassemia, repeated blood transfusions or both

You should find out if you really need to take the Iron. This is needed only in case of actual Iron Deficiency.

Again from the same site:- From:- http://sickle.bwh.harvard.edu/thaliron.html

Should a person with thalassemia trait avoid iron, such as iron-fortified vitamins?
Iron replacement tablets or iron-supplemented vitamins should be taken only as directed by a physician to treat actual iron deficiency or to prevent iron deficiency in high risk circumstances (e.g., pregnancy). People with thalassemia trait (thalassemia minor) are not per se at greater risk of complications from iron in the diet than anyone else in the general population. There are instances, however, in which coincident conditions can increase the risk of iron overload. For example, people with thalassemia trait who also inherit the gene for hereditary hemochromatosis can accumulate dangerous levels of iron by using dietary iron supplements.

On the positive side, it is good to know what you might be dealing with. Atleast that way, you are armed with the information and decide accordingly. There are quite a few Thalassemia(Intermedia) mom's who have delivered healthy babies. Also, some Thal(Major) moms have their own babies, so you would be fine with proper care. Also, how big is your spleen?

Good Luck with Nathan,
-Narendra

Hi Lei,

No need to worry about high Iron yet. The human Liver can store up to 20 Grams of Iron before it becomes too much for it ans that usually happens if you are on regular monthly transfusions for about 10 years or so. After that point the excess Iron goes to other organs and starts to damage them.

It's hard for Transfusion dependent Thals. to keep the Iron level low and have to be put on chelation therapy. Therefore it is recommended for patients on regular transfusion schedule to keep Iron level lower than 1000 ng/ml because the chelation therapy is slow and most people have compliance problems with it and if SF gets too high it becomes even harder to comply with the treatment.

Your case is quite strange, Iron is never prescribed to Thals. if they already have high SF level. I hope your doctor knows what he is doing by prescribing Iron.

Take care, Peace!

I agree with Sajid on the case of taking iron - it can be very detrimental to a Thal Intermedia or Major...If you have Thal Intermedia and Iron Deficiency Anemia...You might want to see a specialist in a big city to manage your treatment.  Your iron levels should be closely monitored then.

I was told the Iron is for the baby, and my folic acid medication is also doubled.  I just hope they really know what they are doing with me...