Rica Lode’s Personal Experience with PGD (Part 4)

This is a multi-part series featuring Rica Lode’s search for preimplantation genetic diagnosis. This week, Rica has some leads in Australia. To start Rica’s story in her own words, here are part 1, part 2, and part 3. Also don’t forget to vote in our PGD poll that’s to your right in the sidebar.

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The Malaysian fertility centre informed me by email recently that although they may offer pre-implantation genetic diagnosis (PGD) but their current FISH (fluorescent in situ hybridisation ) technology cannot diagnose Neurofibromatosis (NF ). They are in the midst of developing PGD technology using DNA hybridisation and sequencing (PCR – Polymerase Chain Reaction) which is appropriate in detecting my husband’s condition. However, it would only be available in a year’s time.

Nevertheless, I would still want to explore our options elsewhere. Once I have done enough research on PGD and of fertility centres/hospitals providing PGD worldwide, the next step would be to shortlist countries that are viable to us. So far, the only other country, beside my home country that has responded to my queries is from Australia. One is Monash IVF, with the help of my Australian friend and the other is Sydney IVF.

Both confirmed with me that they provide PGD services in relation to NF1. Before we undergo IVF/PGD, we are advised to take genetic counselling and/ to provide genetic reports that states the mutation responsible for NF1. I will follow-up with both institutions in respect of its IVF/PGD procedures while at the same time waiting from other countries’ email responses.

Prior to knowing the existence of PGD, we have thought of the available options to us as follows:-

1. Taking on the 50% risk of passing NF gene to next of kin. As of today, there is no test that can indicate whether if the child would have a very mild condition or at its very worse if he/she inherits the gene disorder;
2. Opt for adoption, whereby in my country, Malaysia, would take at least 18 months to 2 years before the approval of adoption procedure is finalised
3. Decide to have no children

Genetic disorders are not as uncommon as you may think. I know of a friend who died in her early 40s a few years ago due to breast cancer. Her family medical history was of breast cancer risk ie her mother, sister and aunt had died young too due to this factor. If PGD options are available to them, can you imagine the difference in their lives today?

If you know yourself or your partner have a genetic disorder which has a risk of passing onto your child; if you have a chance to minimise/eliminate this risk….ask yourself this question – would you take it? As in the words of Linda Clark, who have a genetic disorder called Marfan syndrome:

If you have a chance to give a child the best life you can, most people – if they really think about it – would choose to do that.

Continue reading Part 5.

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