19 weeks pregnant and found out today that baby has beta thalassemia major

Charishma,

I am really happy to hear about your decision  and believe me like Maha said you'd never regret it,life can be challenging anyways,with or with out thal,being a mother itself is a challenge,so you'll do great  .

The scenario for thalassemia has totally changed with all the treatments coming along and it no more a disease,it a disorder,a very manageable one.

Keep in touch,

Zaini.

Dear Charishma

Wishing you and your baby all the best and to have a safe delivery.  

What is so important as Andy and Sharmin had mentioned earlier is taking care of your pregnancy now and taking all the supplemtnts needed to assure that your health and your baby's health will be in their best.

I believe that knowing this condition before delivery is much better cause you will get the chance and the time to understand things more clearly and be prepared. Always remember that knowledge is power. Keep reading as much as possible in our different sections, ask questions and you will find us all here day by day clearning things up and giving you all the support you need.

Have faith that you and your baby will be just fine. We are all so lucky to have our children born at the age where there are treatments that help them to be raised as any other child in this world. All you need is dedication and determination that you are going to raise a healthy child, believe in your baby and yourself. I know that maybe now you will not be able to fully accept this fact but you will be able to give you baby all the care he needs and you will be so proud of him

Please be sure that we are here for you

Take care

manal

Hello Charisma,
I was thinking all about your post yesterday, and I thought I would give my personal advice, what I would have adviced to my sister. It may hurt several people in this forum.

I did not know I was carrying a thal major until after birth. During my pregnancy, I almost lost my baby, and I was very very sad. But that sadness is nothing compared to the sadness I am experiencing now, after knowing.
My baby is 7 months old now, already had 4 transfusions, today getting 5th.  He dreads being pricked, he has been poked from 12th day onwards. I am constantly worried about him and definetely want to go for BMT. Looking for centers for IVF so I can give birth to another child who is HLA matched with him. Looking at centers which will  perform BMT. I live near Philly and go to CHOP and I even am considering moving to Oakland CA, because it is the best hospital for Thalassemia care.

Why I am saying all this is , why do you want to put your child thru such pain, knowingly. Yes, Thalassemia can be managed with regular transfusions, 12 hour chelations, n number of medicines, etc. but read thru the site, and look at all the problems people have faced during and after transfusions. The side effects, the number of medicines to take, the extreme amount of pain and stress to the baby and to you. You are very lucky to have known about this problem in the initial stage. Please dont put your child to so much pain after birth.  You can have more children later who are healthy, and or opt for IVF. Your child is not born yet. It will effect the baby physically, psychologically to know that he is not like other children. It takes extreme mental strength on your part and the child's to rise above this. And I really admire Sharmin , MomofaThalMajor and many others in this site who are so strong.

And again I am extremely sorry if am hurting people in this forum. But I feel, knowingly any mom should not bring a Thal major child. Children should inherit parent's good looks, intelligence, and may be wealth. Not such dreadful,horrible diseases. Please save the next generation.

with apologies
MomOfShreyas.

Mom of Sheryas,

You have the right to say what you think,no one is gonna judge you on that,i am just sad that you are taking a total negative perspective to the whole situation,i know its hard i am not saying its a piece of cake,but to tell you the truth,does it happen everytime that every child inherits good looks,intelligence and wealth from his parents? wouldn't world be more like a paradise if that was the case.

But no,because we are here to spend life with challenges,because we are human beings,we have the ability to face them,i do not intend to offend you at all,i totally respect what you are thinking ,because i know i would have thought the same if i'd have to see my kid being pricked at this early stage of life,but believe me there are so many people who have been through that.

Just think about it that if a baby is born normal,but then he accidentally gets into an accident God Forbid,and looses any part of body,then what would we do,what i want to say is life is not safe all the time,to live you have to take the challenges of life,either its you or your baby,there are no guarantees in life,any one healthy as a horse can die anytime,no one knows when he is supposed to just stop living and go ahead,we see that in our daily lives,don't we? So there are no guarantees,life is the most unpredictable thing enjoy it as much as you can.

Children learn from their elders,my daughter has never shown any kind of sadness or remorse about hat she has,neither has Little A or Ahmed or many other thals we know on this forum,may be because they haven't seen their parents regretting about it either.

Please i do not mean to hurt you my friend  just try to think a bit positively ,i am not saying its not a hard time for you,but hard times become a bit easier when faced with positivity,and you child will learn from you to be positive and take life as normal and enjoy it to the fullest,and let me assure you one day you'd be proud of him and he'd feel the same for you  .

Please forgive me if anything i said offended you.

Zaini.

I'm really not sure what to say right now except for that I do have faith in God.  I am very depressed because I know what is to come for my baby is not going to be easy for them. I do keep thinking how can i do this to them and that is what is keeping me so unhappy right now. 

In the same breath i think - why would God give me this child if he didn't want me to have it? 

I have severe endimetriosis, reoccuring ovarian cysts, low egg count and my husband and i were not compatible.  I was literally killing all of his sperm.  We were going to look into IVF in February and found out we were pregnant in jan.

I cannot say that I'm so THRILLED with my decision that I want to JUMP for joy at this moment.  I cannot say that I do not question my decision every second.  I cannot even say that I am enjoying my pregnancy at this moment or if i will in the weeks to come.  I am still crying and still scared and still very very depressed about everything.  Every minute i'm wondering if this is the right thing to do.  Every minute i'm wondering if there is going to be light at the end of this tunnel. 

Regardless, I KNOW myself and I know I will not be able to LIVE with the fact that I did not give this child a chance. I will be even more miserable than i am now. ESPECIALLY after so many people have touched me with their own stories.  I think that if majority of the people on this site would have told me --- 'no...don't do it...its horrible...and your child will be unhappy, unhealthy and not be able to live normal' -- maybe that would have changed my mind.

If I knew for a fact that this disease was going to KILL my child at an early age...that would have changed my mind.  I swear the only thing I EVER heard on Thalassemia major was that children don't live past a certain age...and that it why I was having such a hard time.  I didn't want to give birth to a child and lose it so quickly. 

Now, i can see that this is not the case and all i need now is the strength that is needed to come to terms with all of this.  As Zaini said - children learn from thier elders.  Once i face this reality for myself - i know that I can get my child through it too.  I guess the positive is that I have a little more time to figure it all out before the baby gets here. 

Hello Charishma and welcome to the family.

I'm very happy that you have decided to continue with your pregnancy.

I'm now 26 years old and sometimes I think about the big amount of things that my parents and I wouldn't have experienced if they'd had decided not to have me. I have been happy all my life and I never thought about thalassemia when I was a child. I just lived my life as a happy child and thalassemia was not a hitch for live it that way.

As you have seen, you'll find on this forum all the information you need at any moment. Andy, Manal, Zaini and the rest of us are going to help you as much as we can.

Welcome again and do not hesitate of writing all your thoughts.

Kisses,

Laura.

Dear Charishma,

My son, lil A, has posted on the forum - to read his posts you may go to:

http://www.thalassemiapatientsandfriends.com/index.php?topic=1814.0

The antibody he talks about came about because we did not do genotype and extensive phenotype before transfusing him.   I urge you to ensure that you have these tests done as soon as your baby is born - and insist on having them done even if the doctors tell you that they are not necessary.  Were it not for the antibodies that emerged, because we did not do these test, thalassemia would not have been a problem for us.  Even with the antibodies, we are managing and he will be fine - but if you can avoid it please do. 

Best,
Sharmin

Welcome on Board.
I am 22yr with the rare anemia pyruvate kinase deficiency. I dont have even a boyfriend, so I probably can't take part of that discussion. However, my future boyfriend must undergo tests -. But to be honest. I dont think I will ever be a (biological) mother.

momofShreyas, I do understand your view. I sometimes wish that bmt was possible. Whatever you do, please keep me up to date.

I am only child because my parents did not want to put an other child with this on the earth. I do know families who took the 25% risk and have an other child with pkd. i must say that I never have met a person with more severe pk def. than me. I have had transfusions since the day I was born and I still got them. I usually get them every 1 - 3 weeks. (Some silly nurse destroyed my own blood when i was been given a change transfussion plus a hemalogist who had the wrong graph in mind  so it took 3yrs to find out what type I had; sadly funny) When I was young, I was every week a few days in the hospital. But you see. it is a completely different situation. None did know we had this nasty gene in both families. I doubt of my parents would have stop the pregnancy if they knew.

Life will be hard in both ways.

 

p.s. motherofSheryas, I must say that it helps me sometimes to look at more ill people. Then I think: OK, I still got some luck. Give it a try. And dont feel quilty, xx

Charisma,

The best decision would be yours and your families. After all, you are the one who has to live with the effects of the decision you make.

Did you and your husband get genetic counselling done? If not, that would be a good step as they open up a different avenue with a lot more information which shows you both sides of the coin.

Yes, we had genetic counseling done before having the baby.  I knew the risks...at the same time....i had a lot of faith that it would work out.

We were still looking into doing IVF with PGD testing because we were told that it would be pretty impossible to have a child naturally anyways so you can imagine our surprise about the pregnancy.

I had a hard time getting here and now i'm here and life has taken a turn...life is ironic.

I'm getting more and more confused.     

Charishma,

It's a miracle that you got pregnant. And yes, raising a thal major child is quite a challenge, but they are every bit as much a child as any other child and the blessing of that child will dominate your thoughts as the years pass. Yes, it is very hard to see your child being repeatedly pricked with needles but it does get easier as they get older, and even with the problems that that do crop up, you will still love your child as much as anyone loves their child. Life isn't easy but we need to recognize the true blessings that do take place and accept them, even when there are strings attached.

MomOfShreyas.

I think you need to look to the future. Your child will not always be a tiny baby and it does really get a lot easier as they get older, and with each new milestone, I think you will find yourself being as happy as any parent, when you see your child take his first steps, starts his first day of school or learns to ride a bike. At some point you will learn to reconcile the pain with the happiness that you see your child finding in life. You'll stop asking why did you allow your boy to endure so much pain and wonder if there could be anything that makes you happier than his smile or the pure joy he gets out of hugging his mom. Why am I so sure? Because I have seen this same exact thing with parent after parent, and being a parent myself, I do understand how dreadful the moment can be, but also how completely fulfilled you will be when that same child walks across the stage and is handed his diploma. I have seen my 3 year old son near death and put on a helicopter to be airlifted to Arnold Palmer Children's Hospital in Orlando, while not knowing if he would still be breathing by the time we drove the hour+ to the hospital, each moment scared beyond belief about our son's future. At that hospital I saw a needle being poked into my boy's artery for a carbon dioxide test...a test that can make a grown man cry, but there was no choice and he endured it twice. After a young childhood that was one rushed trip to the emergency room after another, who would have believed this same boy could possibly grow up to be an athlete, a top performing student, a musician, and frankly whatever this 16 year old boy chooses from life? The point is, no matter how much pain my son had to endure and no matter how much medicine he had to take with all sorts of side effects, it was all worth it and I would never wish that he could have been spared all the pain if it also meant he was never to enjoy this wonderful adventure we call life.

This discussion has brought back a lot of memories of when Christine first came to our group with so many of the same questions. Christine and her husband also knew the risks but decided they would chance it anyway. It was a very frantic frightening time for Christine, but I heard from her early this week and when she talks about Lauryn, she is so happy and proud of her little one, who is doing quite well (I know Sajid is smiling down at Lauryn and proud to know that his words always offered comfort to Lauryn's parents), and whose ferritin is steadily dropping with Exjade being the only chelator she has ever known. Time passes and today's struggles fall away as tomorrow's joys take their place. Please have faith in your ability to confront each problem as it arises and also have faith that in the end you will look at your children and see the blessings that they truly are.

Dear Charishma

Although I have never been pregnant I just wanted to let you know we are praying for you!  I cannot imagine how difficult this must be.  I am not good with words, but just wanted to offer you a little encouragement.

We can understand some things, not quite the same though...my husband and I adopted a little girl from China about 2 and 1/2 years ago.  She is our only child.  Within 3 and 1/2 months of having her she was diagnosed with B. thal Major. 

Our dear one started transfusion in Nov at 2 and 1/2 yrs old.  She is doing great and I cannot even begin to imagine my life without her.  She is beautiful, extremely smart, and quite active.  The Children's Hospital of PA is where we go to get treated and the treatments have just become a normal part of life for our little one.  As a matter of fact, she tends to think everyone gets them.  Her life is as normal as any other child.  She is very healthy and happy.  Transfusion days are just another day for her (although we do tell her ahead of time when we are going) and she loves seeing the doctors and nurses she knows.   She adjusted so fast to the transfusions, it was just amazing. 

The Lord blessed us with a wonderful child.  We are so grateful to have her.  The irony is....on treatment days it turns out to be another family day.  Of course, we would have preferred to have different circumstances, but looking on the bright side it is another day you spend with your child. 

I am not good with words, I just wanted to tell you that things do get better.  We will pray for you.

What a beautiful message ocwoodmanp 

I commend you and look up to you.  I completely agree with you.  Thalassemia is not the end of the world, especially in this day and age.  There are not disabilities, no limitations for a thal born during these times.  Your daughter is so very lucky to have your positive attitude.  How any child, especially a thal child turns out depends on the parents attitude.  Thalassemia does not have to be a burden and thalassemia children are certainly not a burden, they are the greatest gift.  They are beautiful, gifted, responsible and loving children - and it is our job to remember that and remind them of everyday.  You are an amazing parent, god bless your family.

love,

Sharmin

Andy,

What an amazing post.  Your post summarizes my experience with my son - as well as most thal patients who have come to treasure their children regardless illness.  In your case your child was suffering from Asthma - in our case it is thalassemia.  Regardless, it is not easy raising children - and most thal children never face a crisis like the ones your child faced in dealing with his asthma.  We have so much to learn from you and your experiences.  Thanks again for the inspiring message. 

All parents will have tough days - and parents of thal patients will have them too - and that is why we are here, to hopefully help everyone get through the difficult times. 

Sharmin

Dear Charishma,


    You've made the right choice and -as Andy put it correctly- you've also found the best site on the web.

    Our daughter Sophia is 3 1/2 yrs. old and has (what is effectively) beta thal major.

     We knew of my wife's thal minor status, so when she became pregnant I was tested immediately. It was more of a precaution, since I'd been tested for the trait as a child and it had come in as negative.
"Negative again" came in the result.  Nevertheless, when Sophia was about 12 months old, blood tests led to blood tests that ultimately revealed that she was indeed beta thal major -I had an unusual trait called Lepore- that often goes undetected by mistake.

Of course we were devastated.
But then we went and found out what this really means.

My point is this:

My wife and I considered going through legal proceedings against the lab that gave me a clean bill of health when I was tested during the pregnancy.
Clearly they had been negligent.

We're not suing.

That mistake was the greatest thing that ever happened to us. Period.

Had we known that I was a carrier then the subsequent amnio would have confirmed  Sophia's condition and -we've concluded- we would have come under a great amount of pressure that might (and I shiver as I write this) have made us consider the pregnancy.

Thank God for that mistake.

Sophia is our wonder. She's beautiful, (this isn't simply a proud dad speaking, we've had several offers to have her in adverts), extremely sociable, intelligent (she can more or less read, and is now working on the writing), kind, and expressive.

She is without a doubt the most amazing thing that ever happened to us.

I can imagine how you feel. And it is normal and expected.

But I assure you there is nothing that should sway you from the belief that your child will have a normal healthy full life.

Be happy.

Congratulations on your pregnancy!