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Issue 94, September 2006
An Experience Of Pre-implantation Genetic Diagnosis (PGD)

I am a New Zealander living in Australia and I am HD gene positive.

My partner and I have decided that we want to have a second child and we compiled a list of pros and cons on Pre-implantation Genetic Diagnosis (PGD) and after a few months of consideration and a few sessions with a psychologist we decided that the most overwhelming argument for PGD was that we could prevent our next child from having the HD gene and all generations that followed from that child. All other arguments paled in comparison. So we decided to go ahead and take advantage of PGD.

We then contacted a doctor who had been recommended by the Genetic Counselors at the Hospital and had an appointment with him where he explained the process. We were told that we had to pay $1500 to get the complex (two month long) "PGD Test makeup" process underway so we went away to save up and also to have smear test and breast check.

We managed to get the money together within a couple of months and booked in for the IVF process to begin. It was quite an overwhelming experience; my partner was keen to leave it till the next month so he could get used to the idea but I said that I'd rather just get it out the way, see if it works or not then move on.

At first I had to take Provera pills for a week (which made me quite a nice person) and then Lucrin injections into the fatty tissue around the stomach, bum or thighs (administered by ourselves - we got used to this, but a bit it was scary at first) for three weeks. With the occasional blood test and ultrasound (blood test was fine although I was sick of needles by the end of it.) The ultrasounds were for checking the development of the eggs so they have to put an ultrasound probe up your vagina which isn't so much fun but again not so bad once it's over.

All of this, and only 30-38% chance of getting pregnant. Apparently if we make it through to having an egg to transfer into the uterus, the chances of pregnancy are 50% but a certain percentage don't make it through to that stage because no embryos live long enough or those that do, have Huntingtons.

About a week into the daily Lucrin injections I wondered to myself if I was acting a bit strangely but my partner was being very diplomatic and said I was fine.

About two weeks into the Lucrin injections, I started on another injection called FSH so for about a week I was doing two injections in the morning. Our young son saw me with the syringes and said he wanted to inject too!

Five days later I had another ultrasound and the ultrasound operator found I had 19 follicles ready to go. Usually with every normal cycle many follicles develop an egg, but by the time ovulation occurs because of the hormones released naturally by the body, only one egg grows to maturity and is released down the fallopian tube. Whereas with IVF, the hormones they give you keep all the eggs growing to maturity. Later I was told to inject the trigger injection that the nurses had given me and two days later I was booked to have my eggs collected.

It was around this time that I thought I was doing pretty well. I hadn't really become a raging freak of hormones … but the night before my eggs were collected, I had to finish a job late at night and because of the hormones my ability to cope with stress or anything going wrong had disappeared and I ended up kicking things and really losing it, so I would advise a stress free environment around this time.

We also had been given notice on our flat a few weeks before (where I had been for seven years) because they wanted to renovate, so the week of the egg pick up we also had to move house - also not advisable.

We had my eggs collected on Tuesday 14 March (about one month after we had started with the first Provera pill), which required me going in at a certain time with my partner and having a bit more explained to me while I sat all trussed up in a gown with no back and a comfy white dressing gown. I was then taken into a room where I had to lie down on a dentist like chair with my legs spread and was administered a local anaesthetic to my vaginal wall, (so a needle could be pushed through into the ovary) a very nice drug that made me find the whole experience quite enjoyable really even though I was in a rather compromised position.

We could see the ultrasound image on a monitor across the room and as the Doctor sucked the liquid out of the follicles where the eggs should be there was another person across the room searching in the liquid for the eggs.

Afterwards my partner had to go off and have his sperm collected and after he came back the Doctor came out to tell us that we had 22 eggs. We later learnt that 19 were fertilised… five days later there were four that could be tested for Huntingtons. They have to wait until day five because on day five the cells that are going to become the placenta split off from the cells that are going to become the baby and they can suck off a couple of cells from the placenta cells to test - that way they know they aren't taking any cells that might be essential to the baby itself.

Of the four embryos that could be tested for HD they found that three had HD! So we had one available embryo to implant on day five. It was a Sunday so we rushed down when we were called to the day surgery… put the gown on again and in the same chair had the embryo implanted - a simple process of using a long tube like thing to place the embryo in the uterus through the vagina. It was over in five minutes and we wandered out onto the street having been told that we should come back in ten days to have a blood test to see if we were pregnant or not!

The next ten days people had said would be hard but I didn't realise why until I was experiencing it…essentially you are waiting to see if your period comes or not and if you bleed it is bad news (unless it is just spotting). If you don't, it could be good news… so every time I went to the toilet I was worried that I would find I had started to bleed. I tried my best to keep my mind off it but it was a struggle to think positively while not getting my hopes up too high while coming down off all those hormones while waiting ten bloody days!

On the tenth day I went in for a blood test and then an appointment with my psychologist. The results of my Huntingtons Predictive test almost a year before had made me suspicious of 50/50 type situations as I had essentially flipped the coin and lost with the HD test and here I was again - after I had had the embryo implanted there was a 50% chance of it staying and growing. I was a nervous wreck but talking about it was helpful.

That afternoon my partner answered the phone for me and although the nurse wanted to talk to me directly I shook my head vigorously and said, "Just tell me yes or no"… so she told my partner and he told me that "yes" we were pregnant! I collapsed and cried with relief. The whole process had been something that I could cope with once but I wasn't sure that we could cope with it again - financially we had really stressed ourselves to come up with the money once and we didn't know that we could do it again.

At seven weeks pregnant we went for an ultrasound to see if the pregnancy was still viable and it was… we are now 24 weeks pregnant and we know that we are having a second boy! We haven't thought of a name yet but we are amazed at how lucky we have been with IVF and we can't wait to meet the newest member of our family!

Name Supplied

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