Discussion Forums > Thalassemia Major

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

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Andy Battaglia:

--- Quote ---Andy sir, now that your boy has endured so  much pain, would you want another child to potentially endure such pain.

--- End quote ---

I have a lot more to say on this whole subject, but to answer this, yes, 1000 times yes. I would have this same boy over and over and endure it all because this is a boy whose life is well worth living and no matter how much fear and pain I went through, I would accept it all again to give this boy his life. And never once, has this boy ever said he wishes he had not been born. His young childhood was one of frequent rushed trips to doctors and the emergency room and twice admission to the intensive care units, the one time with great fear that he would not survive the night. A childhood spent using a nebulizer 4 times daily and having to lug the nebulizer everywhere we went. He has never expressed the slightest thought about wishing he had not been born. He understands that life has pain and there is work to do to stay healthy, but he also embraces and loves life to its fullest. I talked to him last night about having a needle stuck in his artery at age 3. Yeah, it hurt, but it wasn't even anything that stood out in his memories. What did? The male nurse who attended him and joked with him and made him feel good. He went through incredible pain but that is not what made the biggest impression on him.
 
I have 5 children and each one provided challenges. Thyroid disease at age 10. Pneumonia at age 5. Three kids with asthma. Gallbladder problems at age 14. Life is not easy and life brings pain. All these kids have presented us with different problems but I would not say I wish they had not been born and I could never honestly say that I would not do it all again, even knowing what problems they would encounter. My kids have not had unusual problems. This is all part of being a parent. Should I blame myself for passing on genes that led to thyroid disease and asthma? I don't think so. They are not any medical condition. They are my children and they all have lives that they love. What you do is a parent is what will matter the most. If you present a depressed scared parent to a child, the child will also be scared, but if you show a positive attitude and a belief that your child can have a good life, your children will believe in themselves and believe they can climb every mountain. Can you find your inner strength and become a strong parent who can be a guide to a child whose life will present many challenges? Can you put your own fears aside and see the enjoyment your child finds in life?
 
Would I willingly put my child through everything again knowing all in advance? Yes. Not even the slightest hesitation.
 
Thalassemia is not easy for the patients or parents but for those who have it, it really does help to try and maintain a positive attitude and parents play a big role in this. I see a woman like Shikha whose daughter grew up in India where conditions were not good for thalassemics, but I have never heard a defeatist word from Shikha. She worked hard to make sure her daughter got the care she needed and now her daughter is pregnant and about to make Shikha a grandmother. I am sure she had times of doubt and fear but as a parent, she realized how self defeating this is and persevered and has been rewarded with a successful, happy daughter. So much depends on how a parent approaches the challenges of raising children and if parents are to succeed, even when a child has no health issues, they need to find the strength to deal with all the challenges that life will bring. No one ever said being a parent is easy but it can be very rewarding.
 
One other thing I must say. Think about what you are saying and if it is something you want your child to read when he is older and comes to this group and sees the words his parent said. Will he see words that were full of guilt and self pity or will he see words of determination to do the best no matter what? Will he find strength in the strength of his parents or will he learn weakness and regret? In spite of the certainly overwhelming feelings that can engulf the parents of a child newly diagnosed with thalassemia, it is the life of every good parent to do their best and give their child the best chance. No matter how hard it is, every parent who truly wants to do the best for his or her child, somehow finds the strength to persevere. I am confident that this will happen with our young parents here and that as time passes, the same things will happen for them as it has for the parents who have come here previously and have learned to adapt.

Thalassemia is not fair. It is a disorder that causes many problems. But it is not the end of the world unless you give up and frankly, parents are not allowed to give up. When we make that choice to become parents we accept this. The words of Miaki, who told us the story of being a teenager who complained loudly about her fate apply well here. She told us about how her mother took her to see kids who were really bad off physically. Miaki woke up that day. She learned that she really didn't have things so bad.

http://www.thalassemiapatientsandfriends.com/index.php?topic=179.msg1405#msg1405


--- Quote ---When I was younger I use to blame my parents for bringing me into the world of thalassaemia. I thought they hated me & they wanted me to suffer. At the age of 16 when I was at my peak of rebellion against my parents & the world in that matter and I thought I knew it all, my mother took me to a school were she volunteered her time as a carer for children with special needs.  Upon arriving at this school (I still thought my mother was nasty, but she was about to teach me the best lesson in life) she says to me “ I am about to take you into this school, when we leave later in the afternoon I will ask you one simple question. I will not be with you once we walk in here your on your own to do as you please”

I walked in & I was left speechless, I felt like a complete idiot that I carried on about my life. I saw children / adults in wheelchairs, in beds, some where missing limbs, others were blind, others couldn’t walk, talk, needed aid in feeding & the list goes on. And here was me who was able to play ball with my friends, go shopping, get an education, & go out with my friends to the movies, for coffee. I didn’t need help in dressing, feeding & so on.

When my day visit finished & I got into the car with my mom for the ride home, not a word was spoken. My mother says to me “is there anything wrong with you?” After a long pause & tears rolling down my face I responded with a simple “NO”

My mother that day taught me the best lesson ever, go out there do what you want to do, become who you want to become, nobody has the right to stop you or take nothing from you. You have a disorder you need to take the right motions in life to keep everything in order so you too can see the world that is at your feet.

That changed me & that is what has made me who I am today. I thanked my mother for that special lesson. I was able to move forward & forget about the kids who use to tease me at school for being short, missing out on school often because I was constantly not well & the list goes on. We have to learn to ignore them because these people are not worthy of your company, your friendship, your trust of YOU!
--- End quote ---

Miaki is now a 40 year old mom of a teenage son. Her life has been like the lives of so many people, full of good times and bad, happiness and pain, but she will never again say she wishes she had never been born. Life is the greatest of adventures and what we make of it is up to each one of us.

momofShreyas:
Being practical and pointing out the obvious is NOT BEING NEGATIVE. Life has presented me quite a few challenges and I was able to over come some of them, and did not over come some. I dont want thalassemia to make my life even spicier. But obviously, that is just me..

And NO. My kid will not be reeling with "SELF PITY". Thank you.

There is a difference between loving a child after being born and not wanting when he is fetus at 11 weeks old. I love my child and protect and work for him with everything I have.  As people are saying, no, I DONT consider my child a burden. He is the love of our lives, our joy. We are so unbelievably happy now, and some times I think if he did not have this condition, our happiness would have been not containable. We would have gone insane with happiness.

Again, I feel sorry to have pointed out the obvious. I think Charishma, did not want to know the obvious. She already knows the obvious. She wanted hope above the obvious. Then, there certainly is hope, that is what is making all continue with our lives.

Cari:
MomofShreyas,

Please know that I thank you for giving me your advice.  This was how you felt and what you are going through and I appreciate you sharing it with me.  I can't say i knew what I wanted from all of this but I definitely am getting a lot of information. The good, the bad and the ugly.   ALL aspects are good for me to know.   

I did not know WHAT we are going to face until I spoke to all of you.  I did not know the obvious.  This post was made so that I could have some sort of guidance and to help me figure it all out.  Now i know what I know and that has helped me somewhat figure things out.

I'm sure that everyone on this site has felt what you are when you see you child suffering...after hearing your pain i know i will also go through it and have just as hard of a time. I'm having a hard time with it NOW just thinking about it.  I ALWAYS said that I do not want to see my child suffer EVER and if this was to happen I would probably abort it.  Now, I'm here and being here is an entirely different story.  I don't know the girl who said that before she actually had a child within her. 

Maybe I'll regret it later...but maybe i won't.  I can't read into the future but I know how I feel now and those feelings are very strong.  These feelings are STRONGER than i knew just one week ago.   

Please know that I truly do appreciate your responses and your feelings in this matter.  They are REAL and that is what I asked for no matter how harsh the truth is.   

Zaini:

--- Quote ---Maybe I'll regret it later...but maybe i won't.
--- End quote ---

Believe me you won't,you'll learn to live with the joy your precious child will offer,just trust me on that,initial few years will be hard but then you'll come to know that thalassemia is not a death sentence.

Please keep sharing your concerns,we are all here to support you,and i am sorry if anything i said offended you,you are going through a lot already,i hope we are not making it more difficult for you. :hugfriend

Zaini.

Dori:

--- Quote from: manojmass on April 17, 2009, 08:07:46 AM ---Hi Charisma.....
Lots has already been said,but wanted to just let you know my view as well.....
Whatever the decision, it is tough....
I was in a dilemma whether or not to opine...since you have already made up your mind....
I can imagine your roller coaster of emotions-with the joy of conceiving despite the odds and then this diagnosis...
Life isnt easy anyways...so you have to be strong no matter what. No doubt that the scene is better now and is improving each day...

--- End quote ---

Hello! In January my Chinese friend will move for atleast a year to Guangzhou. I am planning to visit her in the summer of 2010! Maybe you can give me any suggestions to which hospital I should go when things will get wrong. You see, I want to be well prepared. I hope you and your family are doing well. Best wishes Dore p.s. I have never been in China (Asia) before.

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