Dying inside....

Dear christine
After reading your  post ,i remember my own satuation.my daughter sara was 6 months old when the doctor told me they had to transfuse her.i was so shocked,i fell down from chair i was setting on. when the time came to transfuse her i was scared of looking at blood.all the way with her first blood transfusion i could not  stop criying.
after the blood they gave her she got her color back and she had more energy,that when i realised that this is what she needed.she is getting blood now from the last ten months.
i know that its hard for u right now but believe me u will get easier.
About the port,i have the same feeling as u. the doctors told me about hundred times but i said no.
At first  it was hard to find her vain for blood as her vains where too small.they had pok her saveral    time before they find any vain.she used was scream trough the whole process.she still doese but its much easeir to find her vain now.
i want u to know that i really feel for u. may got make this whole things easier on us.

our state of denail is so severe that except between the two of us nobody in my family, freinds or relatives knows about it. How we are keeping it secret like a holy grail. My parents visit us and stay with us they even don't know about it. We keep giving her desferal secretly when they are around.

I know there will be a day when things will come to open, at that point we have decided to refuse to discuss it further. We don't want any emotional stress on my daughter.

Hello Canadian Family,

I don't think this is such a good idea. I know it is hard to explain our condition to the "Layman" but treating your child so conservatively will have even more negative emotional stress on her than what you fear. She will think that she cannot live a normal life and has to remain hidden and keep a big dark secret from everyone in the world. She won't share the little joys with everyone else. As a matter of fact we should do the total opposite of this. We should give all Thals. a chance to live a normal life. You should expose your child's condition to everyone else and tell them that it is not a curse or something. We should educate everyone that with proper treatment this is not such a big deal. Tell her grandparents and all her friends/cousins etc that your child can live a perfect life even with Thal. and I'm sure they will love her no less than they already are.

Well, this is totally my opinion that we should not be so scared of other people for things that concerns only us how to handle our children. What I mean to say is that other people should not worry about what we are doing to our children as we know much better what is best for them.

I'm not criticizing you or telling you to what to do; you better know what environment you are facing and will decide the best for your child. This is just what I think and you need not necessarily agree to it.

Take care, Peace!

I agree with Sajid.  I think that concealing her illness will put a lot of stress on her.   

When I was younger, *I* didn't want anyone to know about my illness, because of a situation that happened to me when I was 6.  I was in a popular newspaper, here in New York, and they did a story on me about Cooley's Anemia and insurance issues. There was a HUGE picture of me in it, with my pump on.  When I went to school the next day, I was attacked with comments.  No one understood what Cooley's Anemia was, so everyone just kept saying that I had "cooties" and many of the kids parents wouldn't even let me hang out with them anymore.  So, I vowed not to tell anyone about it after I moved from the city.  My family always knew, from the time I was diagnosed, but I didn't want any of my friends to know anymore.

Anyway, when I had to conceal it, it was very hard on me.  I couldn't have sleep-overs, and I couldn't sleep over anyone else's house. Consequently, I ended up leaving my pump off a lot, just so that I could feel like a normal person, like everyone else that didn't need to use that darn thing.  I had to constantly make up stories as to why I wasn't in school when I got blood and other stuff.  It put a lot of stress on me.  I eventually ended up telling everyone, and explained in great detail what it is, and why I have it.  I realized that the only reason why I had a problem when I was a kid, is because all those ignorant parents didn't take the time to understand what Cooley's Anemia was, and didn't want to sit their kids down and explain it to them either.  It all has to do with education.  If those parents would have read about Cooley's, and realized that it's a GENETIC disorder, and not something contagious, maybe they wouldn't have made their children ignorant, too.

I know this is a long story, but I learned a lot from it.  I learned that my life now is MUCH easier, ever since I started telling everyone about my illness.  I started to tell a few close friends at first, but then after high school, I didn't mind who knew about it, as long as they UNDERSTOOD what it was all about. I even lectured about it a bunch of times while I was in college, because I knew more about it then my professors did.

I don't know what I would've done if my family didn't know that I have this illness, because they were always there for me, no matter what.  I don't think it would do any good for a child to have his/her illness concealed from their family.  It just decreases the amount of support that the child needs from their family to grow into an emotionally healthy individual.

This is entirely my opinion, and I wouldn't judge someone for something that I didn't agree with, so please do not think that I'm putting you down in any way.  I just think that it will make things harder.  If you are going to conceal the illness from people, I would at least tell your family about it.  You'd be amazed at how much more support you'd probably get.   

Obviously this issue is up to all parents to decide for themselves, and as someone who spends a good part of his life educating anyone I can about thalassemia, I do have hopes that we all will try to make an effort to educate others, which can help remove the stigma associated with the ignorance about this disorder. But I also understand that this varies from country to country and from culture to culture, so each individual has to make this judgment as to what they will tell others.

I would like to mention something that illustrates the contrast between hiding it and being open and accepting as something natural. Lisa was brought up to never hide her thal and was very open about it. She liked to tell the story about how when she first started school, she asked the other kids when they took their transfusions! She just assumed it was something all kids did. She didn't feel odd about it and never thought people would act differently towards her because of it. This is something we should all be striving for. I have been very involved with thals from the Maldives and unfortunately they are often confronted with backwards attitudes about it, which only adds to their struggle. People there still don't realize that thals can survive past their youth and say stupid things like what I was told this week. A mom of a pre-teen thal girl was told by the child's tutor that her daughter won't live long. I was stunned! This type of mis-information has no place in today's world and we need to do all we can to battle these wrong perceptions. Yes, thals still have not reached the average life span but they are living much longer and are normal, contributing members of society, and shouldn't be treated any differently because of a medical condition.

I encourage all to educate people at every opportunity. I understand that this isn't possible for everyone, but when it is, please do so as it can only help to improve the lot of others. 

Thanks.

I agree with Andy, and I'd also like to reiterate that I was not forcing my opinion on anyone.  I was just saying how hard is was for me when I concealed it, and gave some advice.  It's perfectly ok for everyone to have different opinions.

Actually it is often hard for parents to accept that their children are suffering from an illness not every one else is familiar about.  Especially something that they consider life threatening like Thalassemia.

I remember 4 years ago when I was discovered with the Thal trait with my blood dropping to 5 gram, while I was at the same time suffering from a blood infection of Acinetobacter and a lung infection of Pneumonia, with all the IVs and tubes that are attached to my body my mom actually asked me: "If you die before or during your blood transfusion, are you ready?"  I know that is a very painful question for my mother has to ask me, but she asked anyway. In fact, during that time, we are even having financial troubles which made the doctor's prognosis worse to accept for my family.  I am an only daughter and I only have one brother, so we were very dear to my parents. I especially to my mom because we are also best of friends as a mother and daughter

My only weak answer to my mom is: "God is good mama and they say he is handsome so I am not scared, because I will be in a better place."  My mom left my room after I said that, and I knew she was crying at the lobby with my dad and uncles.

After 4 years, here I am, I'm with child, and my family has never been more supportive.  In fact I was so happy I survived, and  I was able to share to my students, my co-faculty, my superiors and even to complete strangers that I meet that I have Thalassemia.  I may be different and special, but I am still the same person like every human being created by God.

Sometimes my family would still feel the frustration knowing that I have Thal and my baby might inherit it, but still I know when my baby comes out that it is okay to talk about it and let people know.  The response may not always be positive, but acceptance is always the key in coping up.

God bless everyone! 

Hi Christine,
I hope you're doing better emotionally, all of us parents of thal patients understand you completely, and all the ups and downs and different feelings you go thru are all normal, there is no greater pain in the world for a mother than to see your child suffer in pain. 

I want to share my experience with you regarding the med-a-port.  My son has had three in his 18yrs.  The first 2 were taken out due to staph infections, for which he was hospitalized both times to treat the infection.  The last one was around 7 yrs ago,  he had it for 2 mos.  went in for his anual, routine echocardiogram,  at which time they found a huge blood clot to his heart that had developed from the port, within hours they performed an emergency open heart surgery.  The surgeon informed me that if he hadn't had this routine test done, as big as this clot was it would've killed him within one week.   I'm sure many people have done very well with the ports and never have any problems, unfortunately that wasn't the case for us. 
I was just 21 when my son began receiving transfusions and when they would poke him 3, 4, 5 times to access his veins I would cry rite along with him, for me that was so hard to go thru.  But the way I see it is I rather cry with him during those painful pokes, than spend my life crying over him because of some stupid complication that can take his life.   So just something to think about.

I also want to comment on the comment about keeping our thal children a secret, my personal opinion, I think that is so wrong, we need to educate people not make our children feel like they're different than anyone else, life is hard enough dont make our children feel theyre not normal.  I raised my son in a town of 6,000 people, everyone knows everyone,  I had many frustruations because people didn't understand his illness so many times people thought he had cancer.  I know everyone deals with it diferently,  and I'm not judging anyone for how they deal with it, but for the parent that doesn't want any family members to know about it, don't you want that emotional support from them.  My son was raised very spoiled by my family because of it and I know it's not good to spoil your kids, but you know when a child goes thru as much as ours do, I don't see anything wrong with giving them as much pleasure as possible.  And let your family be there for you and your child.
Take care Christine and you will do just fine with your daughter, believe me you are stronger than you think.
Lily