Baby with Thal Major

Hi everyone
I just joined today.. My little baby boy (almost 1 year old actually) was diagnosed not too long ago with Thal-Major.
As you guys can understand there's a lot going on...My husband has Thalassemia Minor and my electrophoresis, labs(i.e. hemoglobin level, MCV,etc), family history, etc never indicated any Thal traits.  My son was diagnosed after they did genetic screening for Beta Thalassemia and then they did one for me, and that's when I found out I was a silent carrier. "!!!"
 I saw surfing the web looking up some things about Thalassemia when I saw this site.

Actually, I was looking up "how to cope with ur husband when ur kid has Thal".. but no luck w/ that =)
I guess I was just looking for support group..and this looks good.

 

Hi Yellowdragon and welcome,

First thing, I want to make sure you're in good hands regarding treatment, so where do you live and where is your child being treated? There are thal treatment centers in the US known as Centers of Excellence, that design comprehensive treatment programs for patients, which can be followed by the local centers, with once per year visits to the Center of Excellence for a full evaluation. There is no better care than one will find through these centers. I would also recommend contacting the Cooley's Anemia Foundation and getting registered in their database. They can be a very useful organization for patients and families. Their contact info is listed below. Email Eileen and introduce yourself. I would also be curious as to exactly what your genetic test said. Was it definitely beta thal minor or was it carrier of a similar gene defect, like Lepore? I have seldom heard of silent beta but there are other similar defects of the beta globin gene that when combined with another beta minor, will lead to thal major.

As far as dealing with husbands, this topic has come up before and I think some of the moms here will be happy to give some advice. You're right about this being a good place to be because people find real help here, in addition to a lot of support.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

Hi Yellowdragon,

Welcome on the forum times like these,when your child is diagnosed with a chronic illness,can be strenuous on families,most of us have been through this and we can understand what you are going through,only time will help you,with time and knowledge,you'll be able to accept what your child has and its manageable,with time you'll get use to all the roiutine you have to observe with thal and you'll learn to enjoy your child and thalassemia will become  onlya part of your life.

I am sorry i am not good with words but i still wanted to try to help you you have any problems in particular,regarding dealing with your husband or dealing with thal,do share with us,i am sure one of us will be able to help you 

Much Love,

Zaini.

Thanks you guys!

Thanks for telling me about center of excellence.  I hadn't heard of that term exactly but I know that there are a few thal centers in the US.  It may be linked to that.. i'll look it up.
I'm in western massachusetts.  I take my little one to a local hemonc. and also children's hospital in Boston.  The physician there..one of his specialties is thalassemia.

To answer your Q:  I have a silent BETA thal gene.  ...and I got it from my mom (had genetic screening done on her).. I've heard that sometimes MCV can indicate a potential carrier.. if it's 80 or less.. (80-100 being the normal range).  My MCV was like.. 79.6, or 79, or even 85.  It totally went under the radar. 

I have heard of Cooley's foundation.. My son turning 1 next week =) and my daughter who just turned 2, I just don't have the time especially with all that's going on. I do have a greattt support system.  My family is the best =) 

My husband is a physician.. so it helps that he knows the in and out of some of the things going on with our kid.. but still... it's a big learning process.  ..and neither one of us knew much about transplants, which is what we're planning on doing.   

My issues w/ my hubby,... i think stress or no stress, hubbys can be annoying =)   so it's some of that.. plus.. I think it's the underlying resentment.  I don't know.
I think guys can be babies at times and this is the ONE time I need him to give to me instead of me giving to him.  I feel like he has become the "taker" in the relationship and I've become the "giver" (deep down I KNOW, I really KNOW that this is not true, he is there for me & everything) but for some reason the 1st thought overpowers everything and I feel exhausted.. like I'm just tired of giving.  ..and I just want to quit everything..every association w/ him.

yup.. ..that pretty much sums it down.   

Hi yellowdragon,

Boston Children's is one of the Centers of Excellence. If Dr Neufeld has not already done this, have him evaluate your son and design a treatment program for him. Is he transfusing yet?

It's always something of s shock to the parents when they get the thalassemia "surprise" with their child, and there are many ways that parents will react. I have seen dads get so obsessed with finding the cure (BMT) that they forget all about the need to be a dad to their child. I have seen others that fall apart, and some that basically go into denial and often have very little to do with the child. There is a wide range of reactions. It is difficult at the moment but your husband is an intelligent man and I am sure that in the long run, he will understand his role and let the initial thoughts and emotions fade, as the joy of having your son and realizing that in today's world, a thalassemic child is no longer a death sentence, and in fact is a very manageable chronic condition. Today, most parents are aware of the thal status of their child before the birth and have some time to adjust before the child is born. You and your husband have not had this "luxury" so everything is now new. Nothing in the way you both view your child should change because of thal, and the love you've both felt for your child should be the only overwhelming emotion that gets long term attention. Keep in mind that you have access to Dr Neufeld, and perhaps talk to some of the others here whose children are treated under Dr Neufeld. He was something of the emcee at the recent conference in NYC and I found him to be an extremely personable fellow. Our member Bostonian's child is treated under Neufeld and he and his wife really like him. I am sure your husband has some insight into this, and knows what a difference a really good doctor can make.

Hi Andy,

We've taken our son to Boston Children's.  Dr. Neufeld is his doctor actually.  Well, he's the doctor far away, and then there's a different hemonc. who is close by. 
You're right.  Dr. Neufeld is a really good doctor. 

and you're right..there are a wide range of reactions that parents have. 

It's a tough road though.  It's tough.