Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Eponine on November 26, 2006, 07:36:53 PM
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Was having a conversation with another thal and this topic arose. I would like to know how many of you thals would have a child with another thal. For sure the child would be a thal as well, so would you go through with it?
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Hi Eponine,
My husband and I are both thal minor and knew this prior to getting pregnant. I know your question is directed at majors, but I think I fit in this category.
I knew our odds of having a thal (We went to a genetic counselor,we researched etc...). To be honest, it's not that I thought "it couldnt happen to me", but I wanted a child with my husband so badly, that we decided what ever GOD had in store for us, we would accept it.(Easy for me to say now,.....I was devestated when i first found out.) I still have my moments.
My OBGYN offered us a cvs test when I was 12 weeks pregnant, to see if Lauryn was thal, and I declined. I declined, b/c I knew if she was thal, I wouldnt get an abortion anyway, so why did I need to know during my pregnancy? So I can stress out and risk harm to her and myself? ( I already had extremely high blood pressure, and pre-term contractions.)
Anyway, to answer your question, we did plan Lauryn and wanted her so badly regarless. She was concieved out of pure LOVE, and she will always be reminded of that.
I would do it all over again.(with Lauryn I mean) :wink LOL No more kids for me!!!!!!!!!
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sigh... yes i thought of that too. I mean, i argued with my friend that if I was brought to this world a thal, why can't my child? But he made me see that I might not be able to live with the guilt and pain of seeing my child hurting. I know I have been thru that and really not sure if I can see my loved one going thru it.
That's the difference between our mindset. I live by "meaningful life thru effective management" but his is "stamp out thal" which hurts a little cos if they were to stamp out thal, I would not be here. I would not be what I am.
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Hi Eponine
If my husband and me knew that we are carriers, we could have gone through IVF and PGD.
Manal
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Hi,
As for me, I'd go for a child as long as he/she is not Major.
Take care, Peace!
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I was thinking of a thal maj with another thal maj. Would you then have children?
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Oh, I see. My bad! :biggrin
In that case I wouldn't marry a Thal major in the first place :)
Take care, Peace!
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hi Sajid,
Thats an interesting point. I believe you cannot help who you fall in love with. What happens if your soul mate was a major? Would you adopt, or abandon the whole situation completley?
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Hi Christine!
When love is involved, then it is totally a different ball game. The heart takes over mind and feelings over reasoning.
If my sweetheart is Thal major, then I guess I will go with whatever she decides and recommend adoption as my opinion.
Take care, Peace!
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:thumbsup
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Really?? None of you would have children if both are majors? Is there anyone here who is a major and married a major and had children or knows of anyone?
The rest, what are your opinions?
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My two cents:
scenerio 1
the love of my life is thal major --> i won't reject him, but i won't have his kid. i'll adopt.
no way no how will i bring into the world a child whom i know will 100% be thal major.
BUT BUT!!! the statement is only valid when i'm not pregnant. If somehow (and i really dunno how.... contraceptions fail?? LOL), i find myself pregnant with a thal major, i won't abort. never.
scenerio 2
the love of my life is thal minor or normal -->i'll go for gene therapy to make sure my kid won't be a major.
i am open to having minor kids tho..... i've joked that if i want kids next time, i'll get my sister (who's normal) to be a surrogate mum for my kid. cos i can't do it myself. i've hep c.
oh, while i'm on this topic, i remember a crazy situation i encountered last year.
i was seeing a hema in Malaysia, and she asked me, "so, was it from your mum or your dad that you inherited thal major??" :rotfl :rotfl
where did she graduate from: The University of Jokers??
Lilian
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Your question reminds me of a specialist who said to me " you wouldn't wish Thalassaemia on any child of yours, would you?"
My answer to him was "Yes I would!"
No I would never want to see my child in pain but..Thalassaemia is not a bad thing.
If making me a stronger, well rounded person who can show compassion & humility then Thalassaemia is okay for me.
My husband and I had this conversation after my output and I still feel who better for your child to go through this with? than you. Lead by example and your children will follow your example.
My adopted dad had medical issues and he showed me it was ok to feel, but you still get on with life. I feel that I am very much like him where I will always say there's nothing wrong with me I'm normal and I'm me!
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hii there.im mudz from malaysia.i read many outstanding thread by you here.its really amazing and i think cant be write by ordinary people.atcually i got several question and hope u can answer for me..:
1)im doing thal test and doc said i have e-trait.is it alpha or beta thal carrier?im really confused.
2)my wife have alpha thal trait.what are chance our baby got thal major?\we go to genetic counceling and doc said its only 1% we got major thal baby.
3)my baby(30days old) hb rate drop from 13(2nd day after delivered) to 8(3day ago).is it a sign of thal major?
4)my baby have prolonged jaundice until now.total bilirubin only 111 but direct bilirubin is 74% of it.is it a symthom of thal?
i read in this site that thal major symptom only occor after 3month of age.is it true?
im really need your advice...here in malaysia few support group to get opinion..tq
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Hi mudz 83,
Do you have the results of a hemoglobin electrophoresis for the baby? This would be necessary to make any judgment of what the baby's status is. I am looking for values for HbA, HbA2, HbF and HbE.
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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.
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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
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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
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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.
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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
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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.
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Praying for you mudz and for your baby. Please keep us updated
Manal
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Good luck,i hope every thing goes well.
Zaini.
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thank you..your prayer will make me and my wife stronger..will try to update to you all soon..
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Praying for you and your baby. Please keep us posted, our thoughts are with you.
Sharmin
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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
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I'm so happy for you and your family!
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Praying that all turns out well for your daughter. These early results after the surgery are very encouraging.
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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 :hugfriend
manal