ivf & pgd experience

I was wondering if anyone else has gone through this procedure and what they're experiences were like and how did they feel about the process.

Some background about my situation:

My son, Jack, was diagnosed with Hemoglobin H shortly after he was born.
My husband has Alpha Thal Trait and I am a silent carrier.
My son's numbers have been a little low, and while he is growing, he is still on the lower end of the growth percentiles.  We're monitoring his growth closely and his hematologist mentioned that he may have to start transfusions if he starts to fall off the growth curve.

I had asked her if I was a blood type match for him if he did need tranfusions but she recommended against myself or my husband donating blood as she did not want him building up antibodies against our blood and in case of a future transplant being needed by him from a sibling.
My son's hematologist mentioned to me that if/when we decide to have our next child that we should consider genetic screening (IVF + PGD + HLA matching).
I had known genetic testing could be done but I had never thought of specifically matching for purposes of transplantation (As I understand it, cord-blood could be saved/used) although I'm not sure that this would ever be necessary.

Hi Zofie,

It is becoming more common to use IVF+PGD for both purposes of avoiding having a thal major or intermedia child and also with the thought of a possible bone marrow transplant (BMT) for an affected sibling. Cord blood transplants (CBT) are also becoming more common and may prove to have some advantages over the traditional BMT. Since Jack is still fairly young and the long term outcome is still not certain and transfusions remain a possibility, then doing the HLA match so a baby that matches Jack is planned, would be a good idea. IVF+PGD is the only sure way to proceed as far as having more children regardless. I hope someone else can give you some experience based information about the actual process.

I don't recall if I showed you this list, but there are foods, drugs and chemicals that should be avoided in HbH. Avoiding exposure can minimize the hemolytic crisis that can create a need for occasional transfusions. You can see a list at

http://www.thalassemiapatientsandfriends.com/index.php?topic=3410.msg34830#msg34830

I know it's kinda late, but my husband and I are now going through this process, although we are told that we have to go with ICSI rather than the normal IVF, combined with PGD.  So far, we have had genetics counseling in Vancouver, we received the results yesterday (both alpha thalassemia trait with two deletions on the same gene), which means that we have a 25% chance of having a child with thalassemia Bart's.  The results will be sent to Genesis Genetics in Detroit sometime this week, and then we have to wait for a phone call to schedule a phone interview, then do the phone interview, then wait for the swab kit, then send the swabs in, then wait 2-3 months for the probe, and then officially start ICSI.  Yes, it's a long process, easily takes 4 months of prep time before you actually start the hormone treatment.  I'll keep you posted, if you haven't started yet yourself.

Syb

Hi Syb,

ICSI is used to give a better chance of fertilizing the egg. The procedure has a high success rate and all things considered, is a wise choice for an alpha thal couple. Choosing an embryo that does not carry the alpha deletions will not only prevent the worst, but it will also prevent the gene from being passed on to your children and also eliminate any possibility of your child being thal minor with symptoms. Please do keep us posted. Best wishes to you and your husband.

Hi Zofie
we underwent the ivf-pgd with HLA matching  procedure twice to find a match for my son who had Thal Major(he has since been treated by unrelated cord blood transplant)  both times we were able to get a matched embryo but i was unable to concieve....
the whole process takes about 25 days.we had gone to Bangkok for the same as this facility is not available in India.
all the best
Aabha

Hello Zofie, can you tell me that how much it cost you for PGD, HLA and IVF and where exactly you did it.

kindly reply at earliest.

m.inkuwait@gmail.com