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Melissa and Brad’s Story: Designer Babies

When Brad and I started dating in early 2008, Brad mentioned that if our relationship ended with us having a baby, it would be best if I was tested to see if I carried the CF gene. We meet with the geneticist at Hunter Genetics in Newcastle to have the test (which involved taking a sip of water, swishing it around your mouth and then placing that sample back into the bottle) – pretty simple! Not invasive at all.
When the test result came back that I was a carrier of the CF gene delta 508, which is the same gene of CF that Brad carried, which is also the most common, we went on the discuss with the geneticist what we were dealing with. With both partners being carriers of CF, it results in a 1 in 4 chance of having a child with CF, with 2 in 4 chance of having a child with the ‘carrier’ gene and 1 in 4 chance of a child being NAD (no abnormality detected). So now we knew what we were up against, the choice taken out of our hands of conceiving a baby the ‘normal’ way, IVF was the only chance. With us having infertility issues already, Brad having a low sperm count which can be a factor to carrying the CF gene and myself having endometriosis we were already behind the 8 ball!
We were engaged in May 2008 and married in April 2009 and started our 1st cycle of IVF PGD in August 2009. This involved a nasal spray twice a day exactly and strictly 12 hours apart, injecting the recommended dosage of FSH (follicle stimulate hormone) until my follicles measured a particular size, then 36 hours prior to egg collection, another injection called the ‘trigger’ was given. So basically, a pin cushion! After the egg collection, Brad’s semen was washed and checked, then injected into my eggs, hoping this would result in fertilisation. This is called Day 1. By Day 5 or Day 6, we would know how many eggs were still dividing and had reached the blastocyst stage for biopsy.
Unfortunately for this 1st cycle, we were only able to retrieve 1 egg and we never made it past Day 3 which meant our embryo stopped dividing.

The cost of a stimulated IVF PGD cycle was $11,156.45 if paid in FULL. We did this so we would be rebated quicker and therefore not in debt for too long. The Medicare rebate for 2009 back to us was $5902.36 if the threshold was reached. However, in 2010, Medicare changed the rebate to under $4000 if the threshold was reached. Therefore, instead of being ‘out of pocket’ $5254.09, it was much less (can’t find the exact figure in our paperwork).

Our 2nd cycle in November 2009, we had 3 embryos tested and all 3 embryos indicated affected CF status. The same rebate was given as the previous cycle.

The next cycle was another stimulated cycle which began in February 2010 which this time we were fortunate to have a single ‘NAD’ and 2 ‘carrier’ embryos to use. The ‘NAD’ embryo was transferred and the 2 ‘carrier’ embryos were frozen for future tries. With much heartbreak, I bled before a pregnancy test could be done. This was our 3rd attempt.

Our next cycle around June/July 2010, was a FET cycle, which involves thawing a embryo from the previous cycle to be transferred. This embryo was a ‘carrier’ embryo. The cost of this cycle was $3041.75 with a Medicare rebate of $841.75. We were out of pocket $2200.00.
Once again, I bled before a pregnancy test could be taken.

In November 2010, we had another FET cycle with our last frozen embryo transferred. With heartbreak again, I bled 2 days before my scheduled pregnancy test was going to be taken.
We always thought that with each attempt we were progressing closer to becoming pregnant. However, unless we had financial assistance, we knew that this would have been our last attempt for some time.

As another year begun, Brad and I decided that we would have another attempt but this would be our last go. So we sold our family car and back traded to a older vehicle giving us the difference to be able to have our 6th and last chance of IVF PGD.

In March 2011, with our funds depleted, we applied for a assistance from the PGD Assistance program through Sydney IVF – now called Genea. With absolute delight and tearful happiness, we were selected for a subsided program.
In May 2011 we started our 6th cycle, which resulted in 4 embryos tested, 1 CF affected and 3 NAD. This was the our best result we had had. One of the embryos was transferred in June and the other two were frozen for future tries.

The 24th June 2011, was the one of the best days of our lives with a ‘positive’ pregnancy test.
Finally with the tears, the heartbreak, the emotional/psychical rollercoaster and the cost, we dream had come true. Our beautiful, perfect miracle son was born on Wednesday 22nd February 2012 weighing a healthy 3.63kg.
To this day, we still get emotional about how lucky we are to hold our precious little boy in our arms. We are fortunate that we were able to have many attempts to have a dream fulfilled, it seems unfair not to a Medicare rebate for PGD patients.

Aren’t we saving the government from paying a ‘carers allowance’ and medical costs by having PGD done to eliminate genetic mark of CF in our society. Surely if Medicare increases the rebate, in the long run, they would be better off?

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1 Comment on this post

  1. I am not completely sure I can understand your argument. Why did not you rather try to adopt a child? If you decided that having your “own blood” in your child was more important to you, this is perfectly understandable and one cannot but sympathise with your feelings. But is not it the case that this is a (legitimate) private desire? Why should it be funded by the state? Why should not other legitimate desires be also funded, then?

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