Saskia – IFAASA Director
Even when we only had 1 embryo make it to day 3, we were of the mindset that it only takes one to make a baby and we named our embryo Chesney, after the song “ I am the one and only” by Chesney Hawkes. Fast forward 11 years later and I still get a tear in my eye when I hear that song. The BFN that came along with that cycle, really knocked us for 6 and we had a long talk afterwards about our expectations going forwards. We decided that we would only do 3 cycles, not just due to financial reasons but, also due to emotional ones. You must never underestimate the range of emotions you go through during a cycle, especially when it is a negative one.
We decided we would throw everything we could at the cycles, we would do everything right and, if by the 3rd nothing happened, we would get off the crazy train. That’s why, over the 7 years, we only completed 3 cycles of IVF.
2009: 2 Blastocysts = BFN and nothing to freeze. This negative was so much harder than the first because, the Dr was so sure of himself and we left the clinic with the words “the worst you can expect is twins” ringing in our ears. If there is one bit of advice I would give the Docs, it would be not to over promise. To have a build up of hope for the 2WW, makes the BFN so much harder to deal with.
A couple of years later, we made the decision to apply to adopt. Adoption was never a last resort for us, rather it was something that we had talked about, right at the beginning of journey. We got on the list in November 2011. We did the healthy lifestyle thing that everyone does while TTC, exercising, taking vitamins till we rattled, cutting down alcohol, no late nights, no fun, etc, you know how it goes! I also did reflexology to prep my body (which I really recommend). The other thing I did was to visit a medium, I needed to ask my Gran why, when she knew our struggles, she didn’t organise us a surprise BFP when she got to Heaven the September before (however my sister fell pregnant that same September!). To my surprise, I was told there that I would have a baby boy by the end of the year (which was confusing, as it was already May by that point and…9 months from May is Feb the following year!). We were then ready for our last IVF cycle, fit, healthy and hopeful and began the process in June 2012. As it was our final try, we changed it up a bit, amending all protocols, as well as doing a ZIFT.
The cycle ended in my first ever pregnancy! This is it we thought, the one we have been longing for, our take home baby! The beta levels didn’t rise as expected and our early scan wasn’t hugely positive but, our miracle baby caught up and was perfect by our 12 week scan.
We had a gender reveal party just after our 17 week scan, which still ranks as one of the best days of my life. Our family took turns guessing what sex baby would be and, my husband and I were so sure we were having a boy (as per the mediums’ predictions), that we nearly fell over backwards when the cake revealed pink icing.
It was at the 20 week scan that our world came crashing down. There was something wrong with our little girls’ brain. Her ventricles were swollen twice as much as the normal range for girls. Our Fetal Assessment scan was brought forward to the next day. There we found out that, the enlargements could be down to a blockage, which would be cured by a shunt, as everything else was growing normally. We did an amniocentesis to rule out any chromosomal abnormalities but, the specialist was relatively positive and we started to breathe again.
The interim results of the amnio showed no signs of any of the trisomy’s nor down syndrome. We just had one more hurdle to clear, the full results which looked at every chromosome our baby girl possessed.
On the 15th November 2012 at 8am, the fetal specialist called us and told us that our daughter had a chromosomal abnormality, not compatible with life.
She explained that there was a translocation of 3 chromosomes (no’s 2, 7 & 20), which means something along the lines that some of chromosome 2 is on chromosome 7 and 20 and vice versa. Now, translocations aren’t necessarily a bad thing, when they are balanced, as you still carry the same amount of gene matter, just in a different configuration, but, balanced translocations tend to happen between 2 chromosomes, not 3.
After crying buckets full of tears, we decided to consult with the geneticist who did the tests, as she would be able to clarify the situation better, we were not just going to take the fetal lady’s word for it that we were going to lose our daughter.
We went through to the Flora Park Clinic to consult with Dr Rosendorff. She explained that neither me, nor my husband are carriers of translocated chromosomes and that Eloise’s configuration (ie: 2, 7 & 20) is extremely rare, and, without us being carriers, the chances of our daughter getting it were 1:1million!!!
Without the enlarged ventricles (Hydrocephalus), the chances of severe birth defects would be 50% but, with the hydrocephalus, they became 80%.
We went back to our Gynae straight from Flora Park and he said that, given all the facts, he recommended a termination. Our hearts shattered but, we were not going to give up.
We booked an MRI, to get a better picture of her brain and idea of possible damage.
We also went for a 3D scan to spend time with our brave fighter.
The MRI wasn’t good news, the ventricles were now 65% bigger than normal range, just a few weeks on from our fetal assessment and we still had 16 weeks left of the pregnancy. The prognosis was very bad.
Still we weren’t done, we consulted with the head of genetics at WITS and phoned a professor in the USA who was touted to be the top geneticist in the world. They all came back with the same prognosis and we had hit a brick wall.
Mothers of babies who didn’t make it into our arms, are huge carriers of guilt. What could I have done differently? It has to be my fault, it happened in my belly! Now, just imagine the guilt of a mother, who has to make the decision to end her daughter’s life. As long as I live, I will never, ever get over having to do that.
Knowing we would have to let Eloise go meant we got to say goodbye and those moments I will treasure for the rest of my days.
3 weeks after the loss of our baby Girl, we got the call, advising us that we had been chosen by a Birth Mother and we brought our Son home a few days later, just before Christmas. He is now 5 and he knows he has a sister in Heaven and that we are blessed to have our very own Guardian Angel. We have seen signs from her since she left us and, we believe that she sent us her brother.
People of course still said their silly platitudes “everything happens for a reason” “God has a plan” “if you had Eloise, you wouldn’t have Ashton” etc and I wonder if they think that we don’t actually know that? While our Social Worker said we remain on the adoption list until we have a live birth (at the time I thought that was ridiculous I mean, I was pregnant, what could go wrong?!), she didn’t actively hand our profile out, to any birth parents during our pregnancy and so I know full well we wouldn’t have been chosen for him but, is that something you have to remind me of? If I asked you to choose between your 2 children, who would you be able to see your life without? Right here is where I struggle with my spiritual beliefs, why did God’s plan for me include having to say goodbye to my daughter, in order to gain my son?
After the adoption went through, my husband wanted to close the door to that part of our life and move on. I just couldn’t. Infertility is a disease without any cure. A baby goes some way to healing the wounds left by all the failures and heartbreak but, as a person, you are forever changed.
Pregnancy announcements remain a tough pill to swallow and I still find myself mentally calculating how long the couple have been married/together for and their ages, before deeming whether I am actually happy for them or not, even though I wouldn’t wish Infertility on anyone.
Some relationships fall by the wayside while you are in the trenches, mostly those of unsympathetic friends and family and, your relationship with your partner also takes one hell of a beating. Luckily for me, hubby and I made it through stronger than ever. As for those unsympathetic family members, I have forgiven them but I will never forget the insensitive things they said during that time.
Over the years, I have learnt to turn my bitterness and anger into empathy and patience, it wasn’t an easy process and included psychology sessions. I decided to try and help others, so their journey may be a bit easier on them, than mine was on me. If there were a few things that I could have had, during my TTC years, to make things a bit easier, they were:
- Someone to talk to who understands, ie: support events or access to real life stories
- A local go to website for information on all options of family building
- Information seminars I could attend, to ensure I would be empowered to make informed choices, instead of naively throwing money at treatments, that were never going to work
- a direct link between me, (the general public) and the Industry Experts.
Luckily I found a few like minded women and now, because of us, IFAASA exists.
For me, it is my legacy to my special little girl who, while only being in our lives for 5 months, taught us more important lessons than anyone ever has.