Discussion Forums > Thalassemia Major

My 2 month old daughter may have to get a transfusion soon .....

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Miaki:
Hi Bostonian

Well firstly I would like to welcome you to our online family.

Secondly, have faith your little girl will grow up to be a bright and intellegent young lady and both you and your wife will be very proud of her.

Initially it will be hard for all of you to get into the routine of the hospital visit. You and your wife will feel tired and confused. But trust me as time goes on it does get better and easier. Your little one will not understand for now and for some years to come. You will be her guidence and she will give you strenght.

What I recomend for you to take with you on her hospital visits is something she is attached too. Like a favourite toy, doll or book. These will change as she gets older. But always taking something from home its conforting. I remember when I was younger my mom use to take my doll and my doll also had thalassaemia. (lol, she use to get a blood test just like me)  Now I'm 37yrs old and I take my favourite book or magazine with me. (so i can catch up on all the hollywood goss)

There is a cream you can use prior to being canulated. The cream is called EMLA CREAM. I guess you can buy it from any pharmacy. I dont know what the price would be in the states. The cream is applied on the skin the area of where they will canulate about 5 to 10 minutes prior. It numbs the area.

Well I do wish you all the best of luck. You know were we are if you need any advice. I am sure with time things will be ok. Treatment has changed alot since I was diagnosed and it keeps changinng. I was diagnosed at 3 months old and started transfusions straight away. Your daughters symptoms are classical to most babies being thalassaemia major.

Chin up , think positive , and be there for one another. Your and your wife. We are here if you need any help. Let us know how you get on.

Miaki

Shikha Mitra:
Hi Maiki

If I may say so.. I dont think EMLA is good to use when you want the vein to show up.. any anesthetic tend to supress the vein.. these creams are good for muscular anesthesia.. like when you want to use Desferal..
The best thing is to use a warm bag on the vein.. so that the vein becomes prominent and easy for the needle to go in.. and nowadays caths dont hurt at all..
So cheer up Bostonian.. you and your wife and your baby will sail through all this before you even realise.

And I am positive, she will be cured in 5 years to come..... :)

Shikha

Bostonian_04:
Hi all,

I appreciate all your support. My wife just called me a few minutes back. My daughter will have to go in for the transfusion tomorrow (whenever a bed becomes available in the hospital).

I was a bit surprised with the attitude of the current hematologist. Yesterday, she was not in office, so another doctor, who was backing up for her, told us that our baby needed the transfusion, but they would like to check her again before transfusing her on Sep 26. Today, when my wife called up the hospital to talk with our hematologist to check the status of the various tests that our daughter had undergone (Shikha, you will be surprised to know that out here also the phlebotomists have trouble getting to my baby's veins .... they poke her like a pin-cushion when they draw blood for her tests), she asked my wife to tell her if we wanted to get our baby transfused.

Aren't the hematologists supposed to tell us when to transfuse based on the patient's blood reports? We are not doctors, so how can we make that call. This really upset me. Is this normal? I think I will have to look for a different care provider for my daughter.

Regards,

Bostonian

Danielle:
Hi Bostonian,

I don't believe I have personally welcomed you to the group as of yet, so I'm giving you a great big WELCOME to our family.   :hug

I know you and your wife are scared, but the best advice that I can give you right now is that it's better to transfuse early than late.  I was diagnosed a bit later (9 months), and because I wasn't getting blood transfusions early enough, the bone in my head started to split due to the marrow working really hard.  Once I started getting transfused, the bones in my head went back together and I wasn't sluggish and cranky anymore.  Your little beauty will feel much better by getting transfused.  The treatments may not be wonderful, but she will feel better afterward.

I'm sorry that you guys are going through this, but please hang in there.  As long as she gets her treatments and you stay on top of her care, she has the ability to live a very long and prosperous life.   :happyyes

Manal:
Hi Bostonian

Welcome to your online family

Please make sure that the decesion of transfusion is taken in the correct time. I get the feeling that your doctor is not quiet sure of this . Why don't u take a second opinion? I know that sooner or later she will need tranfusion,but we should go through this when we REALLY need it.

I am telling you this because my son was put on transfusion and we went to the hospital and blood was taken from his father ( he was the doner ) and the blood was filtered, washes and irradiated and they called us to prepare ourselves for the transfusion in 10 minutes.  Then in this remaining 10 minutes i came across with a doctor in the lobby of the hospital ( this doctor is a well known doctor of thal and i wasn't able to reach her as she was out of town and therefore i went to another one who was good but her opinion is always not to leave a child with low Hb ) and i told her about my son's case and she  told me that she heard of him ( as both doctors are collegues, actually, the one who recommended the transfusion is the student of the doctor i meet by coincidence in the lobby of the hospital ) and her opinion is not to transfuse and to give my son a chance through folic acid and supplements as well as monitering his growth. Her opinion was that transfusion will always be her last and ONLY solution and she was right and his hb increased from 6.4 to 7 in one month and i pray that it would be more.

I know that my son and your daughter may not have the same diadnosis or symptoms, but i am telling you this long story to tell you how a second and third opinion is extremely imortant.  In my case, the second opinion stopped my son from being transfused only 5 or 6 minutes before it started.  

You have to feel safe and secure with your doctor and when you feel that you are in good hands, you will be stronger and all your doubts will disappear and both your wife and u will feel much better.

Hope what i said would be of any help to you
Take care and keep us updated

Manal

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