This is an excerpt from my book ‘The Gift I Couldn’t Keep.’ I’ve put it here on my blog so that other women and families who are going through a similar situation can find it easily, and contact me for support or questions. I’ve received so many kind messages and uplifting stories, so if you find yourself here for that reason, don’t be afraid to reach out.
Extract from the book The Gift I Couldn’t Keep:
When we found out the devastating news that our daughter had a terminal genetic condition, we were left wondering how that affected our future family. I always wanted at least one other child, and faced with losing one child too I was keen to have another baby – but it wasn’t that simple. We found out we were both carriers of a faulty recessive gene, meaning that each time we conceived a baby, it would have a 1 in 4 chance of being affected by the disease, a 2 in 4 chance of being a carrier (like us) and a 1 in 4 chance of being neither affected or a carrier. This image makes it clear, I hope. You can only get an affected child when two parents are carriers, which is rare (why couldn’t we win the lottery instead?!)
So, we had some difficult choices to make. We could try for another baby naturally, and hope that this time we would get an unaffected child; We could adopt a child; We could go for IVF with donor sperm or a donor egg; We could apply for funding or self fund IVF with Pre-implantation Genetic Diagnosis (PGD). We both felt strongly that we didn’t want to use donor sperm or egg, and we weren’t ready to go down the adoption route, although I felt that I would if we had exhausted other options in the future. That left trying naturally and IVF using PGD. I kind of felt like we’d had all our bad luck and that Karma wouldn’t let it happen again, plus the odds were in our favour, and it seemed like a hassle to go for the PGD, so we decided to try naturally. We knew the horrible consequences of the disease, and as they had mapped our DNA, we now could have an early pregnancy diagnostic test (chorionic villus sampling, CVS) done at 12 weeks to tell us if the baby was affected or not.
It took 4 months, and then I was pregnant. Amy was still alive, she was about 18 months old. I don’t know why, but I told everyone (close friends and family), I felt optimistic. Those first weeks leading up to the CVS were awful. I couldn’t really get excited about the pregnancy, and if I did, I told myself not to get attached. But I did, obviously. Eventually, the date came round for the test, we had it done in London at St Thomas’ Hospital, as they had all our details. I hadn’t even booked at the Doctors or Midwives, I didn’t want to tempt fate. The test itself was ok, it carries a 1% risk of miscarriage, which was a worry in itself, but the Doctor reassured me that in experienced hands, the risk was actually lower than that. I saw the baby on the scan – would I meet him/her? Then it was an agonising three day wait for the results. I was also half waiting to start bleeding, but thankfully that didn’t happen.
I got the phonecall when my husband was at work – it wasn’t good news. I couldn’t believe it – again? Really? Straight away I just wanted it over with, and arranged a termination to be done the next day. I cried bitter tears of disappointment, frustration, anger and sadness at the life that wasn’t destined to be. Again, we had to tell family it wasn’t happening. The operation was simple, over and done in a day and painless, despite the fact that I would have welcomed some physical pain to match the emotional scar. Right afterwards I wanted to try again straight away, I don’t know why. DH was ok with it, and we did try once which didn’t result in a pregnancy (which I’m grateful for), but then I grew hesitant. I became angry, and bitter. Why couldn’t we just conceive a healthy baby? Were all my eggs tainted? Were all my husbands sperm tainted? I didn’t want him near me without reliable contraception for fear of getting pregnant and the what seemed inevitable consequences. I’d been offered counselling to help deal with Amy’s diagnosis, and I took it up, more because of this issue. I just couldn’t see a way out. I saw a very helpful psychiatrist, who helped me see things in a clear light. I’d resorted to ‘magical thinking,’ like Karma, believing all the sperm and eggs were tainted, and that I somehow deserved it, or that if I did X, I would be rewarded. It turns out life isn’t like that – good things happen to bad people, and bad things happen to good people. You can’t stop bad things from happening, nor can you spend your whole life worrying or waiting for the worst to happen. It made things a bit better and I became more positive – I couldn’t change anything, but I could move forward. We decided we couldn’t go through the whole waiting and hoping again, and that we’d apply for the IVF with PGD.
We had to apply for the PGD through our primary care trust for funding, which would cost approximately £7000! Something we could never afford unless we sold our house and rented. We would only get one go, too, so there was a lot of pressure. The only clinic at the time who did this sort of IVF for our condition was based in Nottingham, a 3-4 hour drive away. We got the go ahead within a couple of months (it felt like forever!) and could start the process. We saw the consultant, and had some initial tests – blood tests, chlamydia test (!), I had a pre-treatment scan of my uterus, which all looked ok (I was super relieved, as I had an irrational fear I’d damaged it during the termination), and my husband had a sperm test – all good! The process would be like normal IVF for the most part, the difference being that once my eggs were collected, my husband’s sperm would be individually injected and once fertilised, on day 3 once the embryos had enough cells, one would be taken out of each for testing to see if they were healthy or not. Apparently at this stage of development, all the cells have the potential to be anything and one won’t be missed – amazing! There was a very small risk of misdiagnosis, but I was reassured that they were so careful it was highly unlikely. Then, if there were any healthy embryos, they would put up to 2 back. I could then still opt for early pregnancy diagnosis to double check. So we went for it in the January of 2009….
To read the whole story, click here.
