My dear friend Carisma,
I can only imagine how you feel right now, getting ready to welcome your new baby and all of the joys that come with it. At the same time you are faced with the uncertainties of thalassemia. I have some words that I hope will offer you some comfort.
As Andy and Zaini have said - you must remember that your baby is not thalassemia, thalassemia is something that your baby will have to manage just like asthma or anything else that people deal with. Right now it must be hard to imagine, but once your little one arrives you will notice how normal he/she is. EVERYTHING will be just like any other baby - except for the monthly visits to the hospital. If your child's hg is kept at a good level, the slight drop at the end (hg of 95) will not affect your baby at all.
My son is beta zero and we began transfusing him at three months. During the first few years of his life he was able to go 4 or 5 weeks between transfusions and we would not notice any change in him before transfusions. I am not sure why the doctor said that beta zero patients go in every 2 or 3 weeks
When he had the antibody issue, at 7 years of age - we had to go in more often (every 2 to 3 weeks) - but now that the issue is controlled we are again going in every 3 or 4 weeks. He is not affected by this very much.
We used desferal for our son, he started desferal at 18 months of age 3 X a week 10 hours a night. Eventually he was quite used to it. Today, most young children start on exjade and they do very well on it - there are some people who are an exception to this but most do very well on exjade. There are also new chelators coming out and your child will have more choices than mine did.
As Andy and Zaini have said - our thal children are displaying academic excellence and athletic excellence. They are also happy, well balanced children. Lil Z is very intelligent and she always places first on sports day at school, she is also a normal, beautiful little girl who is going to live a long, and healthy life. Lil A also wins the academic excellence awards in his school, and even with an injured knee he ranked 2nd in track and field (high jump, long jump, running, etc etc). He was considered an exceptional player for his hockey and soccer team - and most importantly he posses a zest for life that most people can only dream of. He is at his friends birthday party today, tomorrow he will swim and play all day and he is grinning ear to ear. This week he had his eye assessment - he is able to see better than the average person - the ophthalmologist told him to be a pilot because this type of vision is rare.
What I mean to say by all of this is that when we look at all of the other things that describe our children and fill their lives the thalassemia becomes smaller. Most other parents (as they don't know about the thal) tell us that we are very lucky that our children are so intelligent and good at everything that they do - and some of them say that perhaps lil A has some genetic advantage that makes him so good at everything. Isn't that funny? When he was diagnoses the doctor told us that our son was genetically disadvantaged.....
When I describe my son I say that he is happy, intelligent, sometimes stubborn, silly, funny, playful, and a clown. I think of the soccer ball that he cannot put down - and the things he sometimes breaks when he kicks it in the house. I think about him almost missing his bus in the morning, and forgetting to clean the milk mustache off of his face. I think of his first words, his tiny feet as he learned to walk all over our first house. I remember him holding his baby sister for the first time and singing "rock a bye baby" to her - and remarking that she was his baby. I think his first day of school and his pink cheeks after a hockey game. I think of thalassemia too - but thalassemia is something that he has - he is not thalassemia.
When I think of all of the wonderful things that these transfusing thal children are doing - I wonder - what is it that normal children can do that our thals can't? In some ways aren't they doing even more? Going to the hospital with a child that is walking, talking and often running - you walk past children who cannot walk, who cannot think, those who cannot see - those with life threatening illnesses - and then you realize that thalassemia is maintenance.
During our last hospital visit, as I was scolding lil A for running to fast - I saw a little boy in a wheel chair - same age as lil A but unable to move his arms or legs. His hair was like lil A and he reminded me of my son - however this boy had no control over his body, his facial expressions, or his eyes. I let go of lil A and let him skip to the pharmacy - and my heart broke for the little boy and his mother. I prayed that something could help that boy and thanked god for giving lil A everything that he had.
I cannot say to take thalassemia lightly, and I pray for a safe and effective cure soon. In the meantime, I feel that we as parents must learn everything that we can to keep our children very healthy - despite having this disease. We can do this by means of proper transfusions, chelation, diet, excercise and supplementation. I have said this before, but who is to say that our thal children cannot be healthier and have longer life spans - brighter futures than the children of their generation who consume pop, chips and watch tv for recreation? Perhaps they are the parents who should be worrying....
I really hope that this helps to ease your mind my friend, I completely understand the emotional burden that you must be feeling right now. I felt the same way when my son was first diagnosed - and I feel that way whenever I have a big appointment and I am given too much information. Over time the bad feeling fades - as I see how infrequently it applies to my son.
Take good care of yourself - I am very glad that your hg has improved. I wish you a happy and healthy pregnancy. Please post if you ever have any other concerns,
Much love,
Sharmin