Discussion Forums > Thalassemia Major
19 weeks pregnant and found out today that baby has beta thalassemia major
Andy Battaglia:
Charishma,
It's a miracle that you got pregnant. And yes, raising a thal major child is quite a challenge, but they are every bit as much a child as any other child and the blessing of that child will dominate your thoughts as the years pass. Yes, it is very hard to see your child being repeatedly pricked with needles but it does get easier as they get older, and even with the problems that that do crop up, you will still love your child as much as anyone loves their child. Life isn't easy but we need to recognize the true blessings that do take place and accept them, even when there are strings attached.
MomOfShreyas.
I think you need to look to the future. Your child will not always be a tiny baby and it does really get a lot easier as they get older, and with each new milestone, I think you will find yourself being as happy as any parent, when you see your child take his first steps, starts his first day of school or learns to ride a bike. At some point you will learn to reconcile the pain with the happiness that you see your child finding in life. You'll stop asking why did you allow your boy to endure so much pain and wonder if there could be anything that makes you happier than his smile or the pure joy he gets out of hugging his mom. Why am I so sure? Because I have seen this same exact thing with parent after parent, and being a parent myself, I do understand how dreadful the moment can be, but also how completely fulfilled you will be when that same child walks across the stage and is handed his diploma. I have seen my 3 year old son near death and put on a helicopter to be airlifted to Arnold Palmer Children's Hospital in Orlando, while not knowing if he would still be breathing by the time we drove the hour+ to the hospital, each moment scared beyond belief about our son's future. At that hospital I saw a needle being poked into my boy's artery for a carbon dioxide test...a test that can make a grown man cry, but there was no choice and he endured it twice. After a young childhood that was one rushed trip to the emergency room after another, who would have believed this same boy could possibly grow up to be an athlete, a top performing student, a musician, and frankly whatever this 16 year old boy chooses from life? The point is, no matter how much pain my son had to endure and no matter how much medicine he had to take with all sorts of side effects, it was all worth it and I would never wish that he could have been spared all the pain if it also meant he was never to enjoy this wonderful adventure we call life.
This discussion has brought back a lot of memories of when Christine first came to our group with so many of the same questions. Christine and her husband also knew the risks but decided they would chance it anyway. It was a very frantic frightening time for Christine, but I heard from her early this week and when she talks about Lauryn, she is so happy and proud of her little one, who is doing quite well (I know Sajid is smiling down at Lauryn and proud to know that his words always offered comfort to Lauryn's parents), and whose ferritin is steadily dropping with Exjade being the only chelator she has ever known. Time passes and today's struggles fall away as tomorrow's joys take their place. Please have faith in your ability to confront each problem as it arises and also have faith that in the end you will look at your children and see the blessings that they truly are.
ocwoodmanp:
Dear Charishma
Although I have never been pregnant I just wanted to let you know we are praying for you! I cannot imagine how difficult this must be. I am not good with words, but just wanted to offer you a little encouragement.
We can understand some things, not quite the same though...my husband and I adopted a little girl from China about 2 and 1/2 years ago. She is our only child. Within 3 and 1/2 months of having her she was diagnosed with B. thal Major.
Our dear one started transfusion in Nov at 2 and 1/2 yrs old. She is doing great and I cannot even begin to imagine my life without her. She is beautiful, extremely smart, and quite active. The Children's Hospital of PA is where we go to get treated and the treatments have just become a normal part of life for our little one. As a matter of fact, she tends to think everyone gets them. Her life is as normal as any other child. She is very healthy and happy. Transfusion days are just another day for her (although we do tell her ahead of time when we are going) and she loves seeing the doctors and nurses she knows. She adjusted so fast to the transfusions, it was just amazing.
The Lord blessed us with a wonderful child. We are so grateful to have her. The irony is....on treatment days it turns out to be another family day. Of course, we would have preferred to have different circumstances, but looking on the bright side it is another day you spend with your child.
I am not good with words, I just wanted to tell you that things do get better. We will pray for you.
Sharmin:
What a beautiful message ocwoodmanp :clapcheerboy
I commend you and look up to you. I completely agree with you. Thalassemia is not the end of the world, especially in this day and age. There are not disabilities, no limitations for a thal born during these times. Your daughter is so very lucky to have your positive attitude. How any child, especially a thal child turns out depends on the parents attitude. Thalassemia does not have to be a burden and thalassemia children are certainly not a burden, they are the greatest gift. They are beautiful, gifted, responsible and loving children - and it is our job to remember that and remind them of everyday. You are an amazing parent, god bless your family.
love,
Sharmin
Sharmin:
Andy,
What an amazing post. Your post summarizes my experience with my son - as well as most thal patients who have come to treasure their children regardless illness. In your case your child was suffering from Asthma - in our case it is thalassemia. Regardless, it is not easy raising children - and most thal children never face a crisis like the ones your child faced in dealing with his asthma. We have so much to learn from you and your experiences. Thanks again for the inspiring message.
All parents will have tough days - and parents of thal patients will have them too - and that is why we are here, to hopefully help everyone get through the difficult times.
Sharmin
InGreece:
Dear Charishma,
You've made the right choice and -as Andy put it correctly- you've also found the best site on the web.
Our daughter Sophia is 3 1/2 yrs. old and has (what is effectively) beta thal major.
We knew of my wife's thal minor status, so when she became pregnant I was tested immediately. It was more of a precaution, since I'd been tested for the trait as a child and it had come in as negative.
"Negative again" came in the result. Nevertheless, when Sophia was about 12 months old, blood tests led to blood tests that ultimately revealed that she was indeed beta thal major -I had an unusual trait called Lepore- that often goes undetected by mistake.
Of course we were devastated.
But then we went and found out what this really means.
My point is this:
My wife and I considered going through legal proceedings against the lab that gave me a clean bill of health when I was tested during the pregnancy.
Clearly they had been negligent.
We're not suing.
That mistake was the greatest thing that ever happened to us. Period.
Had we known that I was a carrier then the subsequent amnio would have confirmed Sophia's condition and -we've concluded- we would have come under a great amount of pressure that might (and I shiver as I write this) have made us consider the pregnancy.
Thank God for that mistake.
Sophia is our wonder. She's beautiful, (this isn't simply a proud dad speaking, we've had several offers to have her in adverts), extremely sociable, intelligent (she can more or less read, and is now working on the writing), kind, and expressive.
She is without a doubt the most amazing thing that ever happened to us.
I can imagine how you feel. And it is normal and expected.
But I assure you there is nothing that should sway you from the belief that your child will have a normal healthy full life.
Be happy.
Congratulations on your pregnancy!
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