Life with 2 thal major kids...URGENT!!

Dear all,
We have a 18 month old girl who has beta thalassemia major and we are pregnant again. We did get a CVS done and this time too the baby (or fetus) has thalassemia major. I am 35 years old and have gone through 2 terminations in the past. This was perhaps our last hope of having another baby and if luck be on our side, of getting a HLA match for our baby girl. So the result is very heart-breaking.
Having said that, we also know how much joy our little girl is and how special she has made all our lives and that what we are talking about this time is perhaps someone just like her...As such deciding what next to do becomes extremely difficult. We are desperate for some suggestion,advise, information,  anything that would help us in our decision making to go on with the pregnancy or terminate it. We got our CVS result yesterday and don't have much time on our hand. We have to decide soon, so any help will be hugely appreciated.

We would also like to know if there are any families with two thalassemia major kids. If yes, then we would so appreciate to know your experience.
Additionally, at this stage, the only time we are faced with thalassemia is when we have to go for transfusions, and rest everything is almost normal. But could someone tell us what are the possible challenges that we may have to face as our little one grows.



Thanks for being there.

Sk

My dear friend,

I have been thinking of your family all evening.  I hope that someone who has 2 thal major children can help you in coming to your decision.

The decision is difficult and heart breaking either way.  I hope that you are able to make a decision that is right for your family and then feel confident in what you decide.  I will be here to support you through whatever you decide my friend. 

Take care and lots of love,   

Sharmin

Hi...We have 2 beautiful boys, 18 and 14, with Thal Major.
First of all I feel our faith and trust in Allah has made living with Thal and everything else easier and easier for for us as a family so I will say all thanks is due to Allah the Most Great.
From the moment our eldest was born, Thalasseamia has been a way of life for us as a family and when our younger one was born it has continued that way. Life with Thal is our norm.
Both brothers have been a great support for each other and they are doing really well physically and academically. We have always treated them normally..encourage them with the good and a good telling off with the bad. They have always been compliant with their treatment including chelation. Having been on Desferal they are now on Ferriprox for about 2 1/2 years. We have always kept all their transfusion dates and all their appointment dates for Consultant visits, heart, eyes, hearing, T2 Scan, Dexa Scan, Endocrinology on the same days and at one time for ease and so that they can both share in their experiences.
I feel that it is very important to keep strictly to their medical treatment especially chelation as this would help them to keep clear of health complications and help to live a healthy, fuller, normal life. It is important to be open and honest to them right from the start as soon as they start questioning things because they don't see their friends or cousins 'doing this' as I feel it is an easier way for them to accept what they would be living with. Having Thal has made them and us open to things more emotionally mentally and physically so I feel it has some how 'filled' our lives more than it may have been without Thal.
You cannot compare your 2 children, one may be doing better than the other, but you love them equally the same. I am very grateful that God has kept them in the best of health.
It is not easy to make a decision but I hope that whatever you decide is the right thing for you and your family.              

this is great info emby.

SK, I'm thinking of you and praying you are doing okay.

Lots of love...

Even though Carisma does not have two thal children, she immediately came to mind when this question was asked because she had to deal with this same question. Today, Carisma is a the mother of the most beautiful little boy. I don't think there has ever been any second guessing about the decision to proceed with the pregnancy, and the joy this family has because they decided to go forward is immense.

I would also like to mention two young men I know from the Maldives who are both thals. They are now both in their 20's and have good jobs. One was recently married (I can't help but think that our Maako and Akka opened a door for thals in the Maldives to marry). These are two great guys and I am happy they are on earth today. I think Emby has pointed out something we never even consider when this question comes up. Siblings who are thals can give a level of support that no one else could possibly duplicate.

I realize that this is never an easy decision and we will respect any decision you make. Only you and your husband are in the position to weigh everything, and as always, we will respect any choice the parents make.

Andy,

Oddly, I am in the same position as sk, however, we have our cvs on tues.
You are so right about the joy we have with our son and how we could not see it any other way. Even then I have the same fears and do not know how I will handle another thal...emotionally.

Life hasn't been hard...just very emotional.  I am not sure what's going to happen but I hope I make the right decision when the time comes. There are so many factors to both sides and stories like emby gives a little more strength. 

I wish the answer was clearer but it is not. I wish I could just say I can do it....but I don't know. I know I can handle one thal major....but two? I want to say yes...i don't want to consider any other options but i'm torn...






 

I have been thinking about this a lot.  Trying to understand how I feel.  Whereas I love my son and would not change his existence for anything in the world - I do have to consider one thing.  The more beautiful, intelligent and lovable he is - the more pain I feel when he suffers.  It has taken all of my energy and efforts to keep him healthy, physically and emotionally.  I can't describe the nervousness I feel after a series of tests have been done until I get the results. 

Although I accept that all of this comes with having the joy in my life that he is - I have a lot of worry too.  Some people tend to handle things - and handle them in such a matter of fact way - which I so admire.  Looking at my own personality I know that I am consumed with things - I worry far too much and can easily get lost in all of this.  I am doing well with my one thal - but cannot imagine having two.... but that is me and knowing my personal capacity to deal with the stress that is involved.  There is not a day in my life when I am not consumed with a cure for thalassemia - I love my son and want him to live a healthy life free of thalassemia, transfusions and medications. 

I think every person needs to look inward - at themselves and then decide how much they are willing and able to handle.  One should not feel guilty either way.  Some people will tell you that it is wrong to terminate a life - a person who can live a near normal life - others will tell you that it is wrong to knowingly bring a second thalassemia major into the world.  The decision is ultimately for the parents to make.

My heart goes out to anyone having to make this decision.  There isn't an easy decision or path. 

Sending all my love,

Sharmin

Dear SK,
Whether to continue or terminate the pregnancy, is your choice, either way there is no wrong. In fact, I was in your position twice over. The ante-natal screenings for my nos. 3 & 4 showed discrepancies. Nayli, my third child, had congenital diaghrapmatic hernia, diagnosed at 20 weeks. She had a surgery at birth and only spent less than a month in NICU. She did amazingly well. To cut the long story short, my 4th child Adel, at 19 weeks, was diagnosed with congenital heart disease and had a constricted left bronchial and in addition to that Beta Thal Major. Just bear in mind that, even if you have a healthy child, you could also lose your child in other ways what not, be it accident or other life threatening disease. If there's a will, there is a way. God bless! 

I totally agree with Sharmin,you have to consider your own capacity,i have a thal daughter and she has had no problems ever,and we treat her the same as we treat our non thal son,but thats just her,i thought about it a lot too at one time,but what kept worrying me was that what if my other child won't do well with thal like my daughter is,and in our case it would have burdened us financially too,so yeah its a materialistic world and it sucks,if you think you can handle it financially and emotionally,you should go ahead with it,and even if you don't we are not judging,as Andy said only parents can understand what they go through while making this decision.so we respect whatever you decide and we are there for you.

Keep us posted,

Zaini.

I have been searching for this thread since yesterday.  We had this same discussion several years ago - and although discussing it hypothetically, we were able to tap into how we felt about this issue.  Zaini had asked for our opinions about trying for another child, despite having one thal child.  I hope that these posts are helpful to anyone in this situation.

http://www.thalassemiapatientsandfriends.com/index.php/topic,2062.0.html

I will quote a post from Manal and one from myself at the time:

Dear Zaini

When my son was first diagnoised i wanted so much to have a third child, but for a BMT ( i know this is a rude thinking) and i spent 6 months searching about best places for PGD until i realized how difficult & dangerous the consequences could be. So the idea was cancelled though i still believe that i should have continued ( i mean the baby not the BMT ).

I too love children and in the past i wanted to have 4    but this dececion  is not only about thal but also about other variables. To cut it short if i am in your place and everything is okay for me to have a new baby, i would use every possible means to make sure that th baby is free of thal. For me in particular,it is hard live this same situation again. I hope you understand me right, this has nothing to do with thalassemia or how to mange it or anything of this sort but it is me. After my son was diagnoised - no matter how strong i seem or how much support i have here from you or how i believe that there is a hope for a cure--- but i am so fragile from inside and too weak to deal with this situation again. My heart aches everyday and my nature is that i don't accept half solutions either white or black and knowing that thal always lies in the gray area because of its nature makes it hard for me.

There are others who have the ability to deal with it but me is very hard. Again i repeat, it is not the illness but it is my character that is unable to deal with thal again. So i agree to have another baby as long as i go through all the necessary tests

feel free to ask about anything else
manal

Dear Zaini,

As mothers of thalassemia children we are all faced with so many issues that other people don't have to.  

I have a thal child - who did amazingly well until 8 years of age.  He had no complilcations, his ferritin was usually 900.  Suddenly, he developed the antibody issue - although it may be resolved now, I cannot tell you my anxiety over the last two years.    

I personally love and appreciate the children I have, I have no regrets about having the thal child I do have.  He is a happy, brilliant and wonderful boy.  I am also glad that my other child is healthy because it gives me a sense of relief and normalcy in my life.  I personally need this.  Like Manal, I cannot bear the thought of having another thalassemia child because I would not be able to do justice to myself and my children.  Thal children need a lot of time and patience and I can't imagine giving more than one thal child the attention required.    Secondly, I worry how my daughter would feel if so much of my attention were to go to her thal siblings.  It is a full time job already trying to make sure they each get the attention they deserve.  

Because of the uncertainty of thalassemia, I am counting my blessings that my son is healthy and generally has done well with treatment.  Having another child with thalassemia is again is an unknown, not knowing how that child will do with transfusions, chelation, emotionally etc.    I have become so paranoid lately because of what I have been through lately that I am driving myself nuts!  Every little change in my kids scares me to death.  

This is my personal opinion.  I know some parents have unbelievable courage but I don't think that I have much more courage to spare.  I do think that PGD in an ideal world would be a great idea, but as Manal said it is expensive and it needs to be done with great care.  It can be taxing on the mother's body and not to mention the possibility of multiple babies!  It is all a matter of what you can handle.  

Awaiting the results of amnio is very difficult - as you mentioned and can be very draining.  As much as you prepare yourself, aborting your child at the time results are available is devastating because by then you are already in love with you baby because it is already moving.  It can fill you with pain, anger, guilt and regret.  

As far as the moral implications - no one can judge you as long as you are true to yourself.  We are in a unique situation, trying to do what is best for us an our children.  People can judge you either way - for aborting or for not aborting a thal baby.  I have been given the third degree from people for not doing an amnio in my first pregnancy because I am "causing" my child to suffer - essentially telling me that he should not have been born.      The only morality that comes into play here is your own and this is what I have to say to those that judge us     and     !!

Once you have considered all of the issues you personally have and what everyone else has brought up - I am sure you and your husband will make the best decision.  There is nothing more beautiful than having a healthy baby, I guess we just need to be prepared for everything.    Don't forget your own well being and need for happiness and peace of mind.  

We are all on you side Zaini, whatever decisions you make my love and support are with you.  

God bless and may any child you have live a long and healthy life - bringing you joy!  

Love,

Sharmin    

I thought that these posts would be helpful b/c they are completely unbiased and were hypothetical at the time.  

At the same time, I want you to know that these are our thoughts and none of us has two thal major children.  We each have one thal child and one child who does not carry thal at all.  So please also read Emby's post - as she is most qualified to answer your question.  If you can identify with her - and believe that you have the heart and courage - and extremely positive outlook that Emby does - then that option is right for you.  Thalassemia treatment is getting better everyday - and a cure may be on the horizon - perhaps even something like the Hemaquest - which would make life so much easier for a thal child.  You may need to consider how you will feel about your decision today if 2 to 5 years down the road a cure is available.  

I hope that I am not confusing you - I am trying to give you every point of view that you may need in considering your decision.  

Sharmin

Dear SK,

My brother & I are thal major. My mom found out when I was 5 & he was 3...we received our first transfusion around 5 years later (she   put her best effort keeping us from it as long as possible, but the doctor said it wouldn't be good for our growth). My brother had splenectomy when he was 10 because it was so enlarged that made his little posture looked 'funny'.

I can say that our childhood is pretty normal, except that we have to fill up our 'blood tank' once every 2 months (more or less). My mom pays lots of attention to our food, supplements, study, & physical activities. My sport activities was kinda limited...I got half portion of it compared to my classmates. Although it affect my grade (in sport only), it doesn't affect my other study/activities & keep my transfusion period constant...so I don't mind at all. I have no passion in sport whatsoever, anyway prefer to do other non-physical acts like art/music. Due to lack of info (that the vaccinations are always mandatory) after my brother had his splenectomy, he got sick more often than me...luckily nothing serious happened. We've been vaccinated since 6 yrs ago-influenza, pneumovax, meningococcal, friends-and doing okay.

He's now 24 and still pursuing his master degree...I'm 26, working as an IT consultant, and just got divorced with my spleen 2 weeks ago because my thrombocyte level was so low (till 300) when I had a dengue fever last year. It bounced back to 50thou & never got higher than that, so my doctor said it was risky. I hope I'm recovering soon so I can get back to my normal activities. I take daily aspilets, vitamin E, & folic acid...and of course, desferal & ferriprox keep my ferritin level at 800-900.

So...all in alll, I'd say: it's not easy, but it can be done. My parents generally don't treat me differently (well, except in sports area, transfusion, n constant meds) which I think has given me more benefit than detriment. It's been keeping me normal (n I look like non-thal kids...some friends said). Sometimes it's easier for us when we have a friend/sibling (in my case) who knows exactly how it feels...so that we can support each other, telling what to do aside from our prescribed meds. On the other hand, we realize it's been exhausting physically, mentally, & financially for our parents....so I won't blame you for any decision you take. Wish you all the strength & your little one lots of health & joy

Cheers,
Nat

PS: my 2nd brother's thal minor....if we both were terminated, he won't be our 'big baby' forever ;) *just a thought*

To the parents who have to make these heart wrenching decisions:

We will always support your decision. We are not here to judge and we will never question your decisions. This isn't easy for you and the last thing you need is a lack of support from your support group. We went through this a few years back and this group emerged as a more understanding and empathetic group. We will be here for you and I will always remind people that we cannot walk a mile in the shoes of anyone else. We have to accept the decisions parents make. Only they are in position to make that decision and to criticize would be out of line and counterproductive.

Dear all and SK,
I have only two sons. Two of them are HbE Beta Thal major. The elder is 6 the younger is 3. The elder needs blood transfusion every 4 weeks and the second son has not gone through any blood transfusion. I hope this will continue like this with the second one.
 By the time I was aware of the disease my wife was pregnant the second son (5 months fetus). Well, perhaps what I was thinking that time was the same like you are now. I was very frustrated at that time and really wanted to abort him. Luckily, finally we decided to keep him to this world by expecting exactly how it's going to be, to feel and to overcome.
Now that my second son is 3 years old, he is truly our family's inspiration. We now think that we made the right decision to keep him. However, I would like to share some of my thoughts that you have to think your emotion, financial burden and time and effort to take care of them. If you are living in a country where you can get access to a modern or appropriate medical care and treatment and an insurance then it would be much easier that those, like me, who live in a desperate public health system, then the problem of financial burden and treatment are no longer the burden. Second, if you have time to take care of them especially when they are kids to make sure that they eat and play properly then it is no longer a problem.
The care and treatment of Thal has advanced rapidly during the last ten years compared to years back and the research and clinical trials are under the way, although I don't really expect them too much. I can see that thal's life is approaching a normal life. Lastly whether you have hope or not. I find myself strong when I am hopeful thinking that the world will be better. Hope is my inspiration.
As Andy said it is your decision finally. No one will blame or question you. We respect parents' decision.
Sorry to bother reading my long and unorganized ideas.
Cheers,
Souly

Dear SK..
I pray you'll have courage to do whateever decision.
may God bless you with strengh and wisdom.

Amen...

Love, Joyce.

All my thoughts are with you  i can imagine what you must be going through,it breaks my heart,may God give you the courage.

Zaini.