How do parents feel about raising a Thal child?

I have a wonderful tale to tell. I take my son for blood trasfusion and most of the time I like to schedule the transfusion appointment to be the same as this other girl. They are both 3 and can keep each other company. The girl's mother wanted to have another child. She decided to have the child naturally. I asked her what if the child is another thalassemia major and her answer was "Then my daughter will have a companion when going for blood transfusion next time". Wonderful lady, wonderful family.

That is so cute!

You both can keep scheduling the TransX same day and she will always have your son as a companion!

Take care, Peace!

It is very disturbing to me that people are playing the blame game.I am being told I will be" forgiven by Lauryn for her having thal". Im being told that every time my husband and I fight,Lauryn will think its her fault.Everytime i cry,Lauryn will feel its because of her...etc.etc.One mom told me she WOULD NEVER EVER do what I did! (knowlingly get pregnant carrying the thal trait w/my husband) Did I punish LAuryn?Is that what people think?
What ever happened to loving my daughter UNCONDITIONALLY? And her leading a "near normal life", as long as I raise her that way?
People are acting as if Thal is a death sentence! believe me, no one more than myself, wants this condition abolished....BUT she is here and has thal, and I am going to own up to my decision and raise her the best way I know how.
One mom had the audacity to tell me that she will not have her thal child forever and therefore,lets her do whatever she wants.! Who talks that way?Why not believe that you WILL have your child forever? Why not believe they will outlive you? She also said even though the children might comply well, and get the best of treatment, the disease will "ultimatley take them" because of the iron overload stored in their organs?! Talk about depressing.I wonder .....if Lauryn was born with one leg, or had cancer at a young age, would these people say she would still "blame" me?Or is it GODS will that she is what she is?I mean I wouldnt have gotten pregnant in the first place if she werent meant to be.
As a mother of a thal major, I am hurting, and anxious,not because I fear for my daughters life, but because of the unknown with what to expect.(her 1st tx,chelation etc...).
I go up and down every day with my emotions like every other person in the world, but RIGHT NOW i know my baby will live a LONG, HEALTHY, FULFILLING life, and it's about time others think this way too! If we cant cheer each other up regarding thal, then who will?!

Christine

OMG Christine! I cried when I read your post, the replies (esp Andy's) and trying to imagine what you have gone thru / are going thru. I cannot imagine at this time and age there are still such ignorant people who knows nothing about the advancement of medical technology. I feel sorry for them for their ignorance.
You definitely have done nothing wrong bringing this child to this earth. It is better than killing a life. People who tell you they 'never ever would do what you did' are so self righteous! They are the selfish ones, not you. I would have not done anything different from you.
I can understand the anxiousness you feel at the moment caring for your child, but be strong. If our (thals) parents can do it, you can do. I does hurt to see your child in so much pain, but trust me, your child will grow up to be a very strong person. We, or at least I can vouch for that.
I was diagnosed at the age of 4 months with thal and my parents were devastated when the doctors told them that I would not live past 16 years, much less reaching the age of 21. I am now way over 25 years.   I am one of the oldest in this country. I am well and people cant tell that I am a thal. All these I have my parents to thank who made sure I got the best treatment and made sure I did my desferal. I cry just imagining the pain my mother has to go thru when I begged her not to take me to the hospital for my transfusions and desferal.
They don't say it, but I know my parents are now proud of me for what I have becomed. It is very lonely to be thal, so it is important to have the support of fellow thals or parents. Get to know like minded people. It 's good for the soul.  :winky
Take care Christine. Be strong

Hi Christine,

I am appalled at what you've had to hear.  My husband and I also knew that we had thalassemia before we conceived our son.  Of course parents don't want their children to endure anything, we worry if our children have a cold.  We have been blessed with two children - our son has thalassemia meanwhile our daughter does not have either gene for thalassemia.  We look forward to both of our outliving us - living long, healthy and fullfilling lives.  Thus far our son had no problems with any of his treatment - he quite enjoys his tranfusions because he loves spending time with us at the hospital.  He likes his desferal because he gets to press the button to start it - giving him control - and he gets a yummy vitamin C 1/2 hour later.  He actually thinks it is cool having thalassemia.  I hope and pray that he is cured soon, we did not wish for him to have thalassemia (of course there is risk of complications and we were devastated to know that our perfect little boy had this disease), but he is growing up to be a healthy, athletic, responsible, emotionally well balanced boy.  He is an excellent basketball player, hockey player he is 2 years above his grade level at school and he stands up what he believes in. 

I have taken time to show him what life is like for other people who have health problems or live in poverty.  He works hard to help them for the sake of making them "smile".  I always get him to make donations and put food in the food bank so that he develops a sense of responsibility toward other people and realize how much good fortune he has before he fully understands his thalassemia. This attitude is much better than unnessissarily feeling sorry for himself.  I have been told over and over again it is people who feel sorry for themselves or feel that this is "not fair" that don't do well - because they rebel against the disease and don't take care of themselves.  We have taught him that it is only a little poke - small price to pay for good health and a long healthy life.  He seems to have taken this attitude and run with it.  And over the past few years - as he is understanding thalassemia his reaction has been as I had hoped.  He asks questions about how to best take care of himself, but never feels sorry for himself or feels "why me".  This child is going to do something special for the world - as are all of the other thals - he wants to become a doctor and help other children, he wants to help the homeless and the sick - and if he is able to change one life in his lifetime - and is able himself to live a full healthy, long life - who is anyone to tell me that he should never have been born.  There is no guarantee how long anyone will live, what of the child who turns 18, drinks and drives - kills himself or someone else because he was not raised properly and responsibly. 

Hang in there thals, we are lucky to have you all I hope you all live long, healthy lives.  If gene therapy cures you all soon that would be great.  If not - you'll all live to be old and greatful for the full lives you've lived!!   :hug

Sharmin and Eponine,
     What you wrote was very well said, and so supportive. This is the kind of encouragement we need! Thanks for the good words.   

Yes,

Thank you so much for your strength and guidance in Lauryns journey with Thal. I appreciate every word you say (write) LOL, and I know with you help, I will do a fine job raising her!

My wife and I are both beta thal minor (we have a child who is as well).  We just found out my My wife is pregnant with our second and we're going through the same hand-wringing about thal major.  I post this on the parents' portion of this site in hopes that maybe some of you can answer a few questions:

1)  Assuming a thal major assiduously follows all therapy modes, what is a reasonable life expectancy NOW for someone with thal major?
2)  Does ExJade substitute for IV chelation therapy and/or transfusions, or is it supplemental to them?
3)  At what age does a thal major patient have to start transfusions?
4)  Assuming you are a thal minor or non-carrier parent, can you donate your own blood for the transfusions to minimize risks of tainted blood, etc.?
5)  Over time, do your kids adjust to the transfusions or is it always traumatic?

Thank you all very much!  There reallly are VERY few resources out there with as much information as this site!

csdemos@bellsouth.net

Siigh - I have outstanding appreciation for all of you great parents out there. I am a Thal major child myself and I know how hard it is for parents with thal kids and you are all doing/will do a great job! We're unique and special kids - you were blessed with a precious gift because YOU are strong and not many people can pull off having such precious gifts.  haha

Hi CSdemos,
my son has been transfusing for one year now and is about to start iron chelation for the first time.  Exjade here in Australia has only just been approved and our haemotologist is not recommending it until he is 6.  he os turning 5 in april so we have to start with the desferal which i am not too thrilled about.

Does transfusing get any easier.  Not for me and i know my son tries to put on a brave face but each month when we drive in my usually chatty son is very quiet and intraverted.  i think what he has to go through has changed him.  i guess we are all products of our environment. 

on the up side we get to spend one full day together with no interruptions - just real quality time and when he is all hooked up and getting the canular in is over, we quite enjoy filling in the day with games, drawing, new videos, etc.

we tell him god chose him because he is special and he only chose the kids strong enough to deal with it.  he is really into superheroes and when he always request a superheroes blood.  last time he got spidermans blood so when he is finised he thinks he has spidermans powers. 

vic

Vic--

Thanks for the information.  I greatly appreciate it!

And if I understand you correctly:  your son started transfusions when he was 4, will chelate with deferal for a year, then start ExJade when he's 6?  The transfusions take several hours?  How often does he have to go at his age?

You're absolutely right about all of us being products of our environments.  When your son is 10 he'll be one tough little guy with all that Spiderman and Superman blood!  Best of luck to you and thank you very much again for responding!

By the way, if the initial pain of inserting the stent is what bothers your little guy, you might want to ask about EMLA cream.  It's a topical anaesthetic (it's a prescription drug in the US, but over-the-counter in Canada)  that you apply about 45min. to an hour beforehand-- I have to have weekly blood draws for a different iron overload condition and the EMLA cream works great.

Chris  (Csdemos)

Hello Chris,

Welcome to the site. It is always good to have members wanting to learn more about their health.

I am NOT a doctor or a Thal(Major), but can answer a few of your questions, as I have a Thal(Major) niece and have gone through some of your questions

We just found out my My wife is pregnant with our second and we're going through the same hand-wringing about thal major.

I am not sure if you have heard of CVS - Chorionic Villus Sampling (CVS) which is an option and can be carried out during the 8th to 11th week of pregnancy.  DNA is extracted and sent out to decide whether the foetus has thalassaemia major or not.

1)  Assuming a thal major assiduously follows all therapy modes, what is a reasonable life expectancy NOW for someone with thal major?

- This is a very tough question. Each one of us wants to know the answer to this question. I have heard some Thal(Major)s are in their 50's and doing well, while I also hear that some Thals do NOT make it out of their teens. The most important thing is Compliance to treatment and that is one important factor anyone has to consider. Thalassemia leads to other complications, but if ideal management of thalassemia is done, Thal(Major)s can live a fairly normal life. Also, it depends on what type of Thal(Major) are we talking about. If it is Alpha Thal(Major), there are chances of the fetus having complications in-vitro. Are you Alpha Thal(Minor) or Beta Thal (Minor)?

2)  Does ExJade substitute for IV chelation therapy and/or transfusions, or is it supplemental to them? 

Good thing, you brought up this question.
Exjade is NOT a substitue of Transfusion. It is a Oral Chelation tablet, which most of us have been dreaming of to be the magical pill, but each drug has its own limitations and there are some drugs which are NOT for a particular person. I have known of few patients who had to STOP Exjade for Iron Chelation and a lot of us know Kelfer(L1) has not been the drug for them(due to its side effects). Desferal is painful(Inserting needle in the body sub cutaneous).
IV Chelation is usually recommended when the Serum Ferritin level is quite high

3)  At what age does a thal major patient have to start transfusions?

This is a very good question. Christine's daughter is still NOT on transfusion while there are members whose daughter had to get a transfusion for their 2 month old. But, mostly it goes by the Hemoglobin level. The higher the Hb level, the better it is. Also, similar to the child living on the Fetal Hemoglobin in the mother's womb, the child can do well with Fetal Hb in the initial phase of their life, but the problem can start when Fetal Hb switches to Adult Hemoglobin and due to the thal mutations, it does NOT happen well. So, the Hb level starts dropping and if the Hb level goes too low, bone deformities can happen in the child. Although, I guess it depends on the doctors advise and the parents decision.

4)  Assuming you are a thal minor or non-carrier parent, can you donate your own blood for the transfusions to minimize risks of tainted blood, etc.?

Again, it depends. Thal(Minor)s might be able to donate, but that is decided by the facility taking our blood. I know in USA, when I went to donate blood, they said they won't take it as I have just visited India(3 month prior to my donation attempt). Similary, they might have a check list on who can donate at a particular place. In India, I was able to donate, even when I told them I might be a Thal(Minor). They just checked the Hemoglobin level and as it was in the normal range, they took it. I guess it can also be used for platelets, wbc etc if the RBCs were low

5)Over time, do your kids adjust to the transfusions or is it always traumatic?

This question might be better answered by the parents of a Thal(Major) child or a member who has gone through it

Chris, Hope you get some idea of your questions and do ask any more questions to clear any thoughts. We will try to answer as there are many members who have different experiences

Nerendra--

Thank you so much for all the information.  It was very helpful!

We're both beta thal carriers and are aware of CVS.  My wife is having one done in about 2 weeks. 

Best regards!
Chris

No words, just tears....
To hide the anxiety,mask the fears....
Then courage dawns,acceptance hits,
The soul whole,picking up the bits,
Transfusions begin,you become stronger,
Things work out,phases longer...
Chelation begins, some more strength,
Your heart,body,being bent,
You find a group that adds a smile,
madhavi

 

That was really nice.

Aww that was sweet!