How do parents feel about raising a Thal child?

Hi  Everyone

In this site I read a lot about the various problems of the Thalassaemics everywhere and the discussions are mostly health related and between the Thals themselves. But I think the psychological part of it is also very very important.

So, it would be interesting to know the feelings of the parents in raising a Thal child ....how they cope, is there a feeling of helplessness or despair and how they see the future for their children? Is there a feeling about fate having dealt a hard blow and is it  hard to accept?
I dont know how many parents visit this site regularly, but if you do, do express your feelings here freely.
For me, more than the Thals themselves, the parents ought to play a huge role in moulding the psyche of the child in accepting his shortcoming and carrying on with his life to the best of the possibilities. To infuse in him the strength of mind and the confidence that he is hardly any different from others.

My daughter is 29 years old. So back then, things were very very difficult. Desferal had to be imported, the pump had to be imported and I had to learn to be my child's own doctor. It took many years to find the right directions of the supporting treatments.
But I think I have done well so far and she has given me all the happiness and even more than any "NORMAL" ( so called) would give to any Parent. She leads a near perfect life.
But even after all these years. I still feel the pangs of pain when the day of transfusion draws near, when I see her stretching too far and doing the things that would have been easy if she did not have Thal and now to realise seeing her Talent that how much more she could have achieved professionally if she did not have Thal. Then that old question comes back haunting... "Why her?" and even after so many years tears well up. I guess this sense of helplessness and despair will always remain with me, no matter how brave I have been as a young mother and no matter how well I have coped.

Will be glad to hear from you all parents...


shikha mitra

Hi Shikha,

I am the mother of a thal patient,

It took me several years after his diagnosis to truly understand what thal is.  I was very young and had never heard of this disease and because it isn't common where I live there was no one to turn to for advice and information, no internet back then.
We have faced many struggles in the last 17yrs.  When he was 5 he had a bone marrow transplant (perfect match from his brother) I had so many hopes that it would cure him, but unfortunately it failed after 9mos and once again we were getting transfussions every 4wks. For several years he did pretty good the only hard part was the nightly desf infusion, thats always been extremely difficult for him.
He had a few complications with several hospitalization.
The last 5 yrs have been extremely difficult.  First he had to have emergency heart surgery due to a blood clot, caused by a med-a-port. The doctor said that if we hadn't caught it, it would of killed him in a week.  The clot was detected during his annual routine echo.
A couple of months after that he had a liver bx in which they immediately sent us to consult a liver transplant team due to the damage from the iron overload.  Fortunately to this date he does not need a liver transplant, however they still listed him on the transplant list just in case. Currently he does annual bx and they may increase to every 6mos because of the exjade that he is on.  Because of his liver, ferritin levels are not accurate for him as well as the mri.
In the last couple of years he has developed diabetes, allthough he is yet to be put on insulin, his endo says that that will be inevitable in the near future, as he is unable to take meds for it due to the bad liver.  He checks his sugars daily and so far has been able to maintain good numbers, having to cut out all sugar from his diet has been a struggle for him.
He is currently also on growth hormone, he has not developed as other kids his age, he takes a handful of different meds on a daily basis.  Considering all he goes thru, he leads a pretty normal life, he goes to school, out with friends and other than the occassional fatigue, headache, bone aches which he has become acustomed to,  he's good.
As a parent, I just want to see him happy and enjoy his life as much as possible, we deal with problems as they arise and always try to find the positive out of every problem.  At his last liver bx I was told that the liver was actually better which even surprised his gastro cause once its damaged to a certain degre there's no regenerating itself.  He is due for his next one in Aug. I pray that again we will have good news. 
There's been many times that I've been angry and could not understand why me, why him, and then I think, why not me, why not him.  I'm gratefull that my son is able to walk, talk, see, run, play ect.
He has already overcome many obstacles in his life, so what do I see for the future for him? Endless possibilities, not only for my son but for all thal patients.

Take care everyone,
Lily

Lily,
     My heart goes out to your son and your family. You have been through so much in 17 years. I hope and pray that you have good news from the biopsy, and that things will ease up for you all. You have a lot of courage to deal with all the health issues in such a brave manner and with a positive outlook. It isn't easy; you have had to face so many of the problems associated with thalassemia in such a short time.
     It isn't fair that he has had to go through so much. The patience and personal strength he has had to develop will help him in the future. After so much hardship, I'm sure he has also acquired the gift of empathy. At age 17, these things don't mean much, but maybe someday they will.
     We are all here for you, and wish you the best.   Jean    :hug

Hi Shikha, Lily,

I am a father of a 2 month old girl who has been diagnosed with beta thalassemia - we came to know about it on September 13 (I will not forget this day in my life) - I have introduced ourselves under the "The Spotlight" section so I won't go over it again

Well, it has been 4 days now and we are slowly coming to terms with what has happened to our innocent little bundle of joy, our first child. A question always pops into our minds, "WHY HER?". But we realize that we cannot just think about what has happened and get depressed (man, it is really difficult, I never thought that a 35 year old guy can cry like a baby, but that's what I did when we came to know about her condition). What has happened is a reality that we will have to live with it and prepare ourselves to give our daughter all the love, support and understanding that she deserves and convey to her that she is no different from anyone else in this world, maybe even a bit more special.

I am really very happy that I found this forum and came to know you. My wife and I read your experiences and please know that it inspires us to be stronger, you have experienced all this when the awareness about thalassemia was minimal (at least now, I believe that it is growing a bit with the advent of internet) and have gone though a lot of adversities. You have proved to be great parents for your children and we hope that we are able to be the same for our daughter.

I am sure that as time goes by we will draw on your experiences, I hope that we will be able to approach parents like you (and others in this community) for our questions, concerns and also to share the happy moments and the achievements of our little daughter as she grows older knowing that there is a huge community of friends and well wishers from all across the world.

To tell you the truth, we are a bit apprehensive as to how our little daughter will handle the first transfusion (and even more than that ...  how will we face it). I know that it will not be now, but I know that the day may not be that far away ... maybe a few more months (give or take, 5 or 6, I guess). I will appreciate if you could advise if there are any preparations that I need to do before her first transfusion to make it easier for her (I know that because of her age she will not understand what is going on, but I am sure she will be scared when she is poked with a needle - she cries a lot when they draw her blood now for her tests, I don't know how she will react when they have to transfuse).

Regards,

Bostonian

Dear all
         i think we have same feeling regard our children who they have thal. i think shikha said her story with her doughter and if i say my story with my son it will be same ... this is our desteny and what the God wish for us hope this will not happened to our children and all the PpL in all this blue earth ...because the since is jump now more than what we have befor 20 or 30 years ago ...
              Shikha i know how you feel a bout your doughter but normally i used to say to my self WHAT HAPPENED IS HAPPENED AND I CAN'T CHANGE IT  so i have to survive with him  and live with him  and absorbe every thing he met because......... he is my son and he is a gift from the GOD ..
             shikha what i want to say  GOD HELP YOU SISTER AND BLESS YOU AND ALL THALASSIMIC...
       your doughter is my doughter and my son is your son so just be a bilever that one day the GOD will send to you the wright treatment ...
                         sallam your bro. khalifa 

hi bostonian,

you asked the question how can you prepare yourself for her first transfusion, well unfortunately i don't think you can.  i mean, how does a parent prepare themselves to see their small baby being poked and strapped down.  for me that was such a long time ago, but yet i remember it as it were yesterday, i was just 21 when my son started with his transfusions.  he would cry so much, i felt so helpless, i would have to leave the room,  i just couldn't take, many times he would end up with 3, 4 different pokes due to not being able to get an IV started.  as he got older, it got even worse, the hospital that we went to had a big sign of a jiraffe about 1/2 a block before the hospital, as soon as my son would see that jiraffe he would just started screaming and crying, those were difficult times for me, especially going thru it by myself.

that was almost 18yrs ago, i can't explain how to get thru it, it's just something that you do.  you do a lot of crying a lot of why me, why him and at the end of the day the answer is always the same, why not him.  you will soon come to see that you are stronger than you think you could ever be.  you just do what needs to be done.  people use to ask me when he was little didnt it bother me to poke him to do his desferal, of course it bothered me, it broke my heart every time knowing that i was causing him pain, but i did it anyways, i had to, it was for his survival.

thalassemia was very different in 1988 vs today, there are many advances today, just the exjade alone is a miracle, we've been waiting for this pill for 17yrs.  that in itself will help make life so much easier for you and your daughter.  it took the doctors 3mos to figure out what was wrong with my son,  we saw endless specialists, no one could figure out what was wrong, no one bothered to look into my and his father's nationality so thal was never mentioned, i had never even heard of this disease.  it wasn't untill he was hospitalised with a hg of 4 that they thought hey lets look into the parents background, and come to find out we are both carriers.

don't despair, life is much more promising for those born today with thal, with the apropriate care of a good hematologist, your daughter can have an almost perfect life.  my son is almost 18 he has many problems but yet none of which have slowed him down, people would never guess he is sick unless we tell them, he looks just like any other kid, he's a little smaller in size but that's it. 

i hope this helps, take care,
lily

Hi,

This is my salute to all you parents with whose support thal kids can lead a near normal life. I know how it feels to see your kid getting poked and going through the routine of tests and more tests and more pokes.

 :hug this is for all of you.

Peace to all. God Bless all of you and keep your kids healthy.

Namitha

Hi all!

I am feeling very frustrated at this time, and I'd like to vent to all the parents of Thal children.(thals themselves are more than welcome to post their opinion if they'd like).
I've been receiving some replies regarding Lauryns situation,and the fact that my husband and I knew we had the trait, when I got pregnant. 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

Christine,
     I agree with what Kathy said on another post - don't listen to the negative things, go  on doing what you are doing, loving and raising your daughter. Children are a gift that we are blessed with and we do everything we can for them, that is all that is important. Who knows, Lauren may grow up, become a researcher, and find a cure for thal. We don't know what will be in life. We just do the best we can with all the good, and all the challenges life brings. Keep your head straight and block out things that keep you from doing your best.
   Take care Christine! 

Christine,

First I would like to thank all the people that have given you positive support in this forum. It has been sincere and heartfelt. And I know it has had a good effect on you to know that you are not alone and that there are other people who do care. And I greatly admire your determination to give Lauryn a long normal life because that is both realistic and a goal that ALL parents should have for their children.

Second, I would just like to say to the people that have given you negative comments   :wtf

Did we learn anything from the threads involving Jemma? Who are we to judge? Is the name of this group thalassemia patients and critics? What part of the word "SUPPORT" don't you get? When someone comes to us for help, what good does being negative or saying "you should've done this..." do for the person? Chrissy and her husband knew they were carriers. They made a decision to have a child. This is the same decision many people urged Jemma to make should she decide to get pregnant. And as it was then, it is still now. We don't get to make decisions for anyone other than ourselves and we have absolutely no right to tell someone that they have to do it the way we think is right. People make their decisions for their own reasons and we can't place ourselves in their lives to be able to say one way or another what they should do or should have done. It just isn't left to us to be the judge and I don't know of any religion that tells us anyone other than God can be our judge.

When someone comes to us for help and support, that is what they hope to find and quite frankly, it is what we should be willing to give. I think most of the people in this group have gotten some sort of support here and we should all be willing to offer the same to others. There is no need to sermonize or judge, but there is a need for friendship, support and quality information and advice, and that is why this group was founded and as caretaker of Lisa's legacy I will do whatever I can to make sure that is how this group functions. Please, please, offer support.

I also want to address something someone said to you about believing their own thal child won't live.  This is 2006. Please wake up. You will only do your child a disservice with that attitude. If your child complies with chelation, iron overload of the organs will never occur. This is why there are 60 year old patients in the US. This is why the challenge is becoming more and more, dealing with the problems that manifest in older thals, many of which are the result of no available chelation when they were young. If you make certain that your child chelates and never gets iron overload, there is no reason to believe your child will not outlive you, because the chances are, that is exactly what will happen. Instead of letting your child do anything they like, why not prepare them for life the same way you would prepare any other child?

I have a dear friend, Shilpa who lives in India. When she was born, her parents were told that she would not live more than a few years. Her parents could have said so be it, but instead, her father, Ramesh, refused to accept that answer. He sought out every bit of information and even chased down the quite famous Dr David Weatherall as he headed to the airport and learned all he could from one of the great experts on thalassemia of our time. Ramesh NEVER took no for an answer and today, Shilpa is the oldest thal in her community. Why did she survive when the others did not? Her parents' commitment to her survival.

As parents, are you just going to accept the outdated thinking about the survival of thals, or are you going to do everything you can to make sure that your kids not only survive, but will also be prepared for life and have full lives? Your child's future depends on how you answer that question in your lives.

Christine,

Do not pay any attention to the people who have nothing but negative things to say. It is none of their business. Our kids are as good, if not better, than theirs.

I know for sure that with the medical advancements our kids will lead a normal life and will outlive us, and live as long as, if not more than, the non-thal kids.

Christine, have faith in yourself and always remember that your decision to have Lauryn was the right one, no matter what others say.

Bostonian

Hey Christine

Where were these negative things said, beacuse i did not come across them in the site.. were they posted in any  of the dicussion topics.. or they came from your personal friends?

That is why all this discussion is sounding very strange to me.. was wondering where they are coming from?

Well, I have personally spoken to you about my experience in raising a Thal kid, have tried to answer to your querries with my experience and knowledge.. you are reading things on this site.. so why are you so upset what a handful of your friends, who have no knowledge about Thal, is saying to you?

Bostonian and his wife have got in touch with my daughter and I think they were very happy to talk to my daughter, who I believe has given them a very good perspective of what a fruitful and active life a thal can lead.

So I am a bit confused, as to from where you are getting all the negativity from this site?

take care
Love
shikha

hi shikha

no, the comments were not made from this site. they were made at another site. some in the general posts,some in personal messaging.
yes, people who have been very uplifting,such as yourself have made me feel overwelmed with hope....BUT when you have a handful bringing you down, it kind of makes you second guess things? especially in my case, where i do not know much about thal. I am very impressionable, i guess. naive. you know what though? I will not let anyone hinder my hopes and i will continue to gather strength from here, and all of you wonderful people!!!

love,
christine

Hi Christine,

I am glad to hear that the negative personal messages sent to you were not through this group, although it is possible that those people are also members here. I think I know the group where this happened and I was briefly involved there before realizing there were some conflicts and issues about direction that were not to be resolved. The lack of understanding of tolerance was an issue I haven't previously discussed as one of the reasons for leaving there but sentiments were privately expressed to be that showed a great disdain for members of one religion and from that point on I knew my time there would be brief.

For a group like this to function as well as ours does, it does take a good amount of tolerance of the views and beliefs of others and also needs strong leadership that will do all it can to make sure that tolerance and acceptance are cornerstones of our foundation. But in the end it comes down to the members themselves and whether they are able and willing to listen and learn without being judgemental. And for the most part, I think the members of this group deserve a big pat on the back for their willingness to accept others whose thinking may be far different from their own. By doing so, we only become better people oursleves. 

Very well said, Andy. Tolerance and acceptance are two qualities missing from many factions of today's world, and this causes so many problems. They seem like simple things - tolerate others and accept that they are different, live and let live - but for many reasons, this seems to be very difficult for so many to do.
      I am glad that in this forum we are doing our part to look beyond borders, religions, and political views to form bonds with each other. That is all that is important anyway, how we treat each other on an individual basis. If there were no religious walls or political divisions, people would be more free to treat each other as fellow humans. I realize there are other factors that also affect how we act, such as how we are brought up, and the circumstances of our life, but religious and political views are so often used to justify violent or hateful behavior. We have to keep on linking together a chain of love with each person we can connect with, to counteract the negativity going on all over the world.  :blah   
     Well, enough of my rambling. Hope everyone has a good night, Jean