When should my children be tested for thalassemia minor?

I was not aware that I am a carrier until after I was married.

If one (or both) of my children are carriers, should this be taken into consideration BEFORE they marry?  Is it common for someone with thal minor to ask his or her fiance (fiancee) to be tested?
 

Yes, it should be taken into consideration if they plan on having children. While thal minor is not a life-threatening health issue, thal major is, and all steps should be taken to educate carriers about the possibilities when having children with another minor, so testing in advance is highly recommended. There are many parents in this group who wish they had known that both parents were carriers before they had children. In some cultures it is becoming routine to test before marriage. In the US, 42 of 50 states require testing for hemoglobinopathies at birth so that this information will always be in their medical records. Having children without being tested is a gamble that often results in the birth of thal majors. Asking a prospective mate to get tested is doing a favor for both. In the US, couples already are tested for certain diseases before a marriage license will be issued, so adding one more test shouldn't be objectionable to anyone.

I think, if possible the children should be tested as soon as possible. Atleast, that way you know what might be coming into play when certain scenario's occur. There is a range of variation in thal (minor)s too. Some have symptoms and some don't. So, knowing about thal(minor) is important even for a children who is 3 or 4 years of age.

In some schools in India, there are non profit organisations who arrange camps and get kindergarteners and primary school kids tested for thal(minor) as there are regions where there is a high precedence of thal. Parents who have kids who are diagonised thal(minor) at such camps are given genetic counselling so that they get themselves tested and are told that if both are thal(minor)s there is a chance of having a thal(major) child.

Unfortunately, in the case above it works the reverse way of getting people aware of thal(minor) but atleast that way, people might think of it. There are millions of undetected carriers and that can be tough for those who don't know what can happen when 2 undiagonised thal(minor)s plan for a child.

As Andy mentioned, it is a good idea to get tested before marriage and/or having a child. As Andy mentions,in the US, there is testing done at birth. Andy, my question is Can they(Gynaec) do the testing when they see the MCV small in size and be proactive? I know the population in US has a low number when it comes to thalassemia compared to the world but with the immigration pattern in US rapidly changing, it might NOT be a bad idea

Narendra,

I totally agree. In fact, any and every doctor should send patients for testing anytime they see anything unusual about their blood. The dramatic increase of thal majors being born to second generation Asians in the US clearly demonstrates the need for testing anyone who might be a carrier. In terms of cost of care, this may basically become an epidemic if more isn't done to inform potential parents of the possibilities of having thal major children. When care for a major in the US is higher than $100,000 annually, it does seem that it would be more cost effective to spend money on testing rather than a lifetime of care. I believe this group does as much as anyone on earth to spread this information. We have no funding. We have no budget. But we do have hearts that care and perhaps that means more than anything else.

Effective 2007 all the newborns in Ontario are tested for hemoglobinopathies and other genetic conditions, genetic counselling is provided to the parents as well. This measure will help reduce the number of blood disorders and other genetic conditions. I am hoping there would be only few thalassemia major cases in Ontario atleast.