Thal + thal = thal. Would you?

Hi mudz 83,

Hemoglobin E (HbE) is caused by a mutation in the beta globin gene. Alpha thalassemia is caused by a deletion of the alpha globin gene. The results of a hemoglobin electrophoresis are needed to establish which combination of thalassemia genes your child has. You probably carry some hemoglobin trait, most likely HbE, but since alpha thal carrier status is difficult to determine, you could possibly also be an alpha carrier. If this is the case, you could have a child with HbE Hemoglobin H (HbH) disease. This results in an moderate anemia that should not require transfusions, similar to thalassemia intermedia. This is the worst case you could expect and is only possible if you also carry an alpha thal deletion. If you don't and only carry HbE you should expect some anemia but more like what many thal minors experience. I agree that there is only an extremely small chance of the baby being a thal major, unless some unknown other gene defect is present that has not been diagnosed. This seems unlikely, considering what they do know. The baby's test results would be of much help in giving further advice.

If a hemoglobin electrophoresis has not been done, it will need to be done, but the doctors may wait until after 6 months to do so. If it is possible or becomes possible in the future, both parents should also be tested by electrophoresis and maybe also a DNA analysis.

We also need to remind our member, Nur to post a listing for the thal associations in Malaysia.

hii there.andy,im really appreciate your quick response.im really suprised and touched by ur kindness.My baby will doing thal test in march.i hope can share the result with u.
Actually my baby was scheduled to do surgeries for suspected billiary atresia but had to be postponed because her Hb rate very low(8). So doc said maybe its related to our trait.
Although we just now you and this site less than 3 days,i feel very much like family here..I you want to have any information about malaysia or want to visit here,we more than willing to be your guide..
I hope god will bless u in all good work you done all this time..
May i know whats your occupation and what move you to start this site?are you carrier or have thal major?
Hope to hear from u soon..tq tq tq

Hello mudz83 and welcome to the site

Andy does not have thal, but is our advisor and administrator here on the site. He is so dedicated to helping all thals all over the world and he has touched a lot of lives.

Wish you all he luck with your baby, please keep in touch


manal

Hi mudz83,

My best friend started Thalassemia Patients and Friends as a Yahoo group in 1999. In 2002 she moved it to MSN. IN 2003, I became her assistant, as her health was worsening. She passed away in 2004 and I have continued her site in a new location since then. I am not a thal and it is not part of my life outside this group. I do this for my friend, Lisa and I do it because it is needed.

From the blood tests you sent me, I can state that you definitely carry HbE and that it is very likely that your wife has alpha thal trait (two genes affected). This could be verified by a DNA analysis, but that may not be necessary. Unless you are a silent alpha carrier (one gene affected), your child will most likely have a thal minor status. If you do carry the alpha gene, there is a chance the anemia could be classified as moderate, but this still would not require blood transfusions. As the doctor told you, there is almost zero chance that the status would be similar to thal major. Babies do go through a short period where their Hb does drop, but not as low as yours has, but if there have been multiple blood draws because of the jaundice and to diagnose biliary atresia, this could be an overlooked factor in the Hb drop. Combined with a thal minor status, this might explain the current low HB level.

The possibility of Biliary Atresia appears to me of much more concern right now than the thalassemia status. Was any imaging scan done to confirm the diagnosis of biliary atresia? A good article about Biliary Atresia can be seen at
http://www.pediatriconcall.com/forpatients/CommonChild/biliaryArtpat.htm
Best success rates for the surgery are when it is done before 8 weeks.

hii Andy and manal,
tq 4 ur reply.i definitely agree with u that for now bil atresia is more concern for me now than thal.for your info,doc have done scan 3 times but cant locate/find the gallblader.my baby stool very pale.will see the specialist on 8th of feb to do LFT test.if direct bilirubin level still increase,doc will perform OTC operation.if it indeed any obstruction to the duct,so Kasai operation will be performed.For now,my wife and i try to prepare our mental and emotion for any possible outcome.For guys out there who familiar with kasai procedure know that this ops are very risky.hope all friends here can pray for my baby safety..see u again soon.

tq so much

The earlier this surgery is done, the better the chances of success. It is a risky procedure but the only chance for patients with Biliary Atresia. If this is confirmed, the surgery should take place very soon.

We pray that all goes well for your child.

Praying for you mudz and for your baby. Please keep us updated

Manal

Good luck,i hope every thing goes well.

Zaini.

thank you..your prayer will make me and my wife stronger..will try to update to you all soon..

Praying for you and your baby.  Please keep us posted, our thoughts are with you.

Sharmin

dear all friend here,
my baby indeed have billiary atresia and doc did kasai ops on 17th feb.its 6hour ops.i hope can attached my baby picture next time and show all of you my baby abdomen after ops.after 1day,my baby stool dark and green.doc said its a good sign.today doc ask my wife to start give milk and remove the epidural tube.thank god my baby can withstand the pain and i keep telling my wife she inherited it from many inspiring stories of survival and of course its include those from this site.thank u all.u all keep my spirit high and give me strength.me and my wife said from the beginning our thal trait is gift from god.it taught us to be stronger and always prepare for any consequence.And now our baby got billiary atresia but we accept it as our faith and will do our best for our baby.may all your prayer make u s stronger and hope u all can accept 3 of us as your Thalpal...tq

I'm so happy for you and your family!

Praying that all turns out well for your daughter. These early results after the surgery are very encouraging.

mudz83,

I am glad that everything went well and that you and your wife will now start enjoying your daughter. Please, always keep us updated about her

I am really happy for your family

manal