Our Story

So you don't have to trawl through the entire blog to find the information you need, I've summarised our experience below, with links to the relevant entries. I hope you find it useful.

Chapter 1
We got married in 2006, and about a year later we decided to try for a baby. I found out I was pregnant after about six months of trying. However, that ended in miscarriage at 6 wks. That entry is found here. Still, I was pregnant for long enough to order 'Baby Names 2008' from Amazon. That book stayed on the shelves taunting me until I took it down a few months ago (along with 'What to Expect When You're Expecting' - I can tell you quite firmly that nothing I have experienced while expecting was covered in that book!).

Chapter 2
We didn't get pregnant again for another year after that, and when we did, I was petrified that I would miscarry, because of course, that's the worse thing that can happen in pregnancy, right? To our relief, I didn't miscarry. But it was the start of something much worse. At the first scan, when I was 10 1/2 wks along, to our shock they found that our baby (I purposely use the words baby rather than the clinical 'foetus' because he always was, and always be a baby to us) had things wrong with him - the scan showed an increased nucal and an exomphalus. That entry can be found here: Dreams Turn to Dust. We were rocked to the core - finding anything wrong had been the last thing on our mind. The abnormalities deteriorated, and at the same time, the penny dropped about what the hospital expected us to do about it. I was horrified that this was an option. I didn't realise that people who wanted babies, who were in a position to bring them up, could be faced with such a decision. But when they told us, at 18wks, that our baby, who we'd by now discovered was a boy, had a brain abnormality (agenesis of the corpus callosum) we realised that he would be mentally disabled and it would never be ok. The day after that scan, I felt him move for the first time. Now the level of mental agony went through the roof. I simply couldn't believe we were in this situation. It was inhuman. After getting a second opinion, we agreed to end the pregnancy at 20wks, and I gave birth to our baby after they induced labour. That entry is here.

Chapter 3
It was an agonising 18 month wait before we got pregnant again. Now my bubble of naivety had been truely popped as in the intervening months I had read up everything I could get my hands on about fetal abnormality and what can go wrong generally in pregnancy and birth. But lightening couldn't strike twice could it? Surely this would be our time? The 12wk scan was fine - our baby had no problems! But I knew we had the 20-week anomaly scan coming up, and it obviously isn't called that for nothing. And indeed, at that scan they found something.  The ventricles in his brain (we were having another boy) were larger than they should be- the Sum of All Fears. We were horrified. I simply did NOT want to give birth to another dead baby. It was impossible. How could this be happening to us? Just how trigger-happy was the fetal medicine unit?! Just how low is the bar before they recommend termination?! But the brain abnormality continued to deteriorate. We couldn't deny it. Every time we had a scan, more and more of our poor baby's brain was being obliterated. He would be mentally and physically disabled. He wouldn't be one of the lucky ones. How could this be? Who or what was doing this to us?! We realised that there must be something genetic going on, but the doctors had conducted every test and we were no closer to getting an answer. When the extent of his brain damage was beyond doubt, we took the view that it would not be fair to bring him into this world knowing full-well that he would suffer and there would be no cure, just management at best. We again took the decision no human being should ever be asked to make.

Chapter 4
It took another few months to get an answer, but we did at least get one, for which I will be eternally grateful for: Finally, a Reason Why. It turned out that both our babies had a chromosomal abnormality, called an unbalanced translocation, that was too subtle for conventional karyotyping (done via CVS or amnio) to pick up on. They eventually ran a test called an array CGH, and found both boys had an unbalanced translocation of chromosomes 6&9. Because they both had the same thing, the doctors knew either myself or my husband had to have the balanced version. Further tests showed that it was me. More tests showed that neither of my parents have it, and I am what is known as 'de novo' - a new, spontaneous occurence.

Now we know it is 'BT', we now also know that 'UBT' pregnancies have a scarily high re-occurence rate. Many UBT pregnancies end in first trimester miscarriage; those babies which survive beyond the first trimester are liable to die at any point in the rest of the pregnancy, at birth or in the early days/weeks afterwards. Those that survive beyond infancy generally have significant disabilities. Many people with BT will struggle to have healthy, living children, but many are lucky and beat the odds

Chapter 5
Because the condition is identifiable, IVF combined with a technique known as pre-implantation genetic diagnosis (PGD) is available to us. And because we are so traumatised by our experience over the last four years, we attempt a go of IVF/PDG rather than leave it up to Nature again.

IVF with PGD is a ruinously expensive procedure but we were granted funding for one round of IVF/PGD by our PCT, for which I am humbly grateful for (if I ever win the lottery I will set up a fund for those who need IVF/PGD but have been rejected for funding by their usual sources - insurance (US)/local health authority (UK)).

Our first round yields four embryos, but 'none are suitable for transfer' as they were all unbalanced. Our disappointment is crushing. Our second round of IVF/PGD goes a little better - we get two unaffected embies. But they turn into a BFN. We do a third round of IVF/PGD and we get few eggs or embies, and what we do get is again unblanced. We decide to throw in the towel on IVF/PGD.

Chapter 6
We decide that we will explore egg donation. I sign us up to do a weekend session with the Donor Conception Network to find out more about it. However, we then find out we are expecting. At the 12wk scan, it's evident the baby is sadly unbalanced and we don't need to wait for the results of the CVS. That's TFMR #3.

We go along to the DCN 'Preparing for Parethood' workshops, and it's really good, and allays the concerns I had about the implications for would-be parents, the donors, and of course the child.
We sign up to a London hospital that does a lot of ED, and also sign up with Altrui. Alison and her team are absolutely lovely people to work with and I am so glad we went with them. They find us an anonymous, altruistic donor and we go ahead in January 2015. We are now waiting to see if either of the two embies I have 'on board' will take. Watch this space...