Hi there! new here. :)

Hello,

I'm Tina and I have alpha thal minor/trait. I've known that I've had alpha thal minor since I was small. Both my mom and brother are carriers as well and for some reason the attending when I was born mentioned it to my mom after I was born only because the attending did her research on thals.   My DH and I have a DD who is 3.5 years old and is thal negative.  Recently we had another baby girl (7 weeks) who has been diagnosed with Hemoglobin H disease.  I'm of Chinese decent (southern chinese and 100% as far as I know) and my DH is supposedly of purely German stock.  Turns out that he is a silent alpha thal carrier as well.

We had done some testing before with DD1 because I knew that I was a carrier and wanted to be sure that we weren't going to be having an alpha thal major case.  At the time DHs results showed that he was negative for alpha thal.  Lucky for us DD1 is not a carrier at all. With DD2 I received a call from the state of CA newborn screening people/HMO telling us that they detected Bart's Hemoglobin in her screening test and sent us more tubes for more testing.  The results came back in and I got a call from the Hemotologist in LA with our HMO, that DD2 indeed was HbH.  (which has me scratching my head to the previous testing for DD1)
We got a referral to a Hemotologist here in our area and we meet with her on Thursday.  When we find out more.  I worry about what her future holds. 

I came across your site in trying to research HbH and all it's symptoms/treatments/things to expect.  I've read a bit around and I must say I've learned more about Thalassemia in the last week or so than I even knew. 

I look forward to reading more.

cheers,
tina

Welcome Tina

i hope you'll get the answers you are looking for.

Zaini.

Hi Tina and welcome,

Is the hematologist you're meeting from LA Children's hospital? It has one of the top thal centers in the US.

It's with Kaiser in San Diego. With a Dr. Lammers. 

I would strongly suggest an evaluation also be done at LA Childrens. They have a dedicated thalassemia center there and do excellent work. It may be a one time visit or they may wish to see child annually, depending on whether or not any treatment is required. For the most part, alpha thals are instructed to take daily folic acid supplements lifelong.