Discussion Forums > Thalassemia Major

my new baby just diagnosed with thal major pls help

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Sharmin:
Ava's family,

I would also like to congratulate you, your beautiful little baby will be getting the best care possible. 

When parents first receive a diagnosis of thalassemia for their child, they begin to mourn a loss.  They mourn the loss of a normal and healthy life for their child.  As a mother of a thalassemia major child, let me help you realize that this is only a perceived loss - in reality you and your child can have the life that you had hoped for for your child.  With proper care, she can do anything that you give her the confidence to do - maybe even more. 

Thalassemia is less well known and understood in society than other chronic conditions, therefore we are afraid of what it means to our lives.  One day, once you settle into a routine of transfusions and chelation - and your little girl reaches all of her milestones one by one - amazing you all the while - you will find yourself saying "is this it?  this thalassemia thing?"  Just like people deal with asthma, diabetes or any other chronic condition - you can live with thalassemia.  Remember, Ava is NOT sick - and she needs the same encouragement and discipline as any other child.  Don't let thalassemia define your child, let her personality and accomplishments define her.   From reading your posts I know that Ava is part of an amazing family - between your attitudes and the wonderful hospital she is going to be treated at - Ava's future is very bright. 

Congratulations on your beautiful little girl:):)   :congrats

We are all here for you if you have any questions along the way - we feel fortunate to have you as part of our family:) 

Love,
Sharmin

Kathy11:
Congratulation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! to the Avas' family, :flowers :flowers :flowers :flowers

A child birth is a gift from god. take one day at a time enjoy the blessing.
With good management this child can become the leader of her country.

Remove fear from your heart and  your life and your  childs' life with be flowing with happiness.

there are always  someone worst off than us.


Good wishes from Kathy

avasmom:
                                       :biggrin :biggrin

                        i just wanted to thank u all for your input it has been so helpful . i appreciate each and every one of u for taking the time to look over my post,and taking the time to answer. you all have been more helpful then u will ever know,
                              ANDY,  i just wanna thank u from the bottom of my heart for informing me about childrens memorial hospital!!!!the hospital i initially found out my daughters diagnosis at was so negative, they had no bedside manner, they were tellin me we will start transfusions at 4 months , she would be on the chelation pump until she was 2,they wanted her to go into surgery to get a port,and that she would have to get a liver biopsy every two and a half years , the doctor was getting frustrated with my questioning and i left that hospital devistated!
                        when u told me about childrens i immediatly looked into it they have a wonderful program, and wonderful staff of people who specailize in thal!!!!!.no port,no chilation pump,no set date for transfusions, when her level starts to drop we will begin the transfusions.when she is 2 she will begin oral chilation, no liver biopsys ever, they can messure the iron in the liver through mri, they were so informative and they also have genetic counseling so that me and my husband can have another baby, that will not carry thal , and at that time, they will beable to use the new babies cord blood to give ava what she is lacking , and hopefully cure her, i now strongly believe that my daughter will not live her whole life with this disease , they are doing so much research and i believe a cure is near.i left that hospital feeling great!!and i just want to thank u again , because with out your one little comment my daughter would have been so much worse off!!you are truly a life saver!! god bless u and thank u again!!!!!

Narendra:
A huge relief for us too. Getting through the gloomy outlook itself is a big move. Very glad everything turned out so well. I hope more people visit this site to get the support and less people get doctor's like the one Ava got when she was diagonised. That is one thing, I thought would never happen in US, but to my dismay, it also happens here in USA, where doctor's are not up to date on what new developments are their in treatment and cure.

Andy Battaglia:
The value of being treated at one of the Thalassemia Comprehensive Care centers or one of their satellite hospitals, or at the VERY LEAST, an annual visit to one of the centers, cannot be emphasized enough. Being treated at a hospital that understands thalassemia and its treatment will make a huge difference in the quality of life of thalassemia patients.

We can and do make a big difference in many lives.

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