Thalassemia Patients and Friends

Discussion Forums => The Spotlight => Topic started by: CatB on June 10, 2010, 05:59:00 PM

Title: New to this forum from Toronto Canada
Post by: CatB on June 10, 2010, 05:59:00 PM

Hi everyone,

I've been reading through all of these postings for the past couple of months.  I must admit that it is very overwhelming.  Information overload.

I am currently 23 weeks pregnant.  The baby boy I carry has been diagnosed with Alpha Thalassemia Major.

I had my first intrauterine transfusion three weeks ago.  I had my followup last week and the doctor says that the transfusion went well....so far so good.  I'm scheduled for another intrauterine transfusion next week.

I don't know much about this disorder and I'm finding this forum very helpful.  I wonder if there are any other parents of children with Alpa-Thal that can help me understand what we are going to experience in the future. (how many more intrauterine transfusions?, premature birth?, mental health of baby???)   I have so many questions.  All I know is what the doctors tell me......but they don't know first hand like those that are living with this in their lives.

Thank you Andy for your advice.  This is a great place to come and hear from others their experiences both positive and negative.
Cathy

Title: Re: New to this forum from Toronto Canada
Post by: Andy Battaglia on June 10, 2010, 06:20:16 PM

Cathy,

It is so good to hear back from you. I am so happy that your baby is able to get transfusions before birth. Not all alpha majors are viable in the womb, so this is wonderful news.

Once your baby is born, it will be pretty much like raising a beta major, so you will find plenty of good advice here.

Title: Re: New to this forum from Toronto Canada
Post by: Bobby on June 11, 2010, 04:23:37 AM

Welcome Cathy.

Title: Re: New to this forum from Toronto Canada
Post by: Zaini on June 11, 2010, 06:39:20 AM

Hello Cathy,

Welcome on the forum, :welcomewagon You have come to the right place,and its a good thing that you have joined the forum before your baby is born,it will give you a chance to understand everything,we were caught off guard when our daughter was diagnosed,and off course its hard whenever you find it,but it will help your baby much more if you have knowledge about his disorder .

You'll find a lot of information by reading through posts,and if you have a particular question in mind,plz feel free to ask :) .

Zaini.

Title: Re: New to this forum from Toronto Canada
Post by: Sharmin on June 11, 2010, 03:12:49 PM

Dear Cathy,

One of the children my son is transfused with is an alpha thal major - he also received intrauterine transfusions.  The young boy is very healthy and very bright - no different than my son.  He does well with the transfusions and often when he and my son are transfused together they play video games together.  I think that your son will do very well also.

Best wishes as you await the arrival of your son,

Sharmin

Title: Re: New to this forum from Toronto Canada
Post by: Manal on June 11, 2010, 09:39:32 PM

Welcome Cathy :wink

Manal

Title: Re: New to this forum from Toronto Canada
Post by: CatB on June 20, 2010, 10:54:22 PM

Thank you Manal, Zaini, Bobby & Sharmin.  I am sure I will find lots of answers here to the many questions I have.

Sharmin: Thanks for the reassurance. The doctors have scared me into thinking that my son will have mental deficiencies because of his growth in the womb with the lack of oxygen to his brain.  I was relieved to hear of the alph thal major whom your son is transfused with.

Title: Re: New to this forum from Toronto Canada
Post by: Laura on August 18, 2010, 11:02:13 AM

Welcome to the forum!!!

Title: Re: New to this forum from Toronto Canada
Post by: Madhavi on August 18, 2010, 11:41:36 AM

Dear CatB,

WELCOME!
You have come to the right place...
Information,tips, help, friends, love,support-you've got it all!

Madhavi