Our journey to parenthood
The back story...
There is a gene (CDH1) in my husbands family that means diffuse stomach cancer is highly likely after age 18, we learned he had this when we were 30 years old and about to try for a baby.The world protocol is stomach removal as soon as the CDH1 gene is discovered. However we are extremely lucky that the world experts in scanning techniques for this type of cancer are based in Cambridge, right next to my in laws. After some horrible deaths in the family, several of my husbands cousins had their stomachs removed. More recently his father and brother also had theirs removed too, my husband and his sister will do the same one day but scans allow them the gift of choice of timing.
The gene has a 50/50 chance of passing onto a baby and the NHS currently offer IVF/PGD for free for up to 3 rounds to try conceive a healthy CDH1 gene free child. PGD is a little different to IVF in that the embryos have to grow in a lab for 5 days before they are biopsied and frozen whilst the biopsy is genetically tested. Despite having no fertility issues, for Mila (our first born) we went down this route to avoid passing on the gene, we had 15 eggs collected, 11 were mature eggs suitable for fertilisation, 8 fertilised and 4 grew until day 5 and were biopsied. As the gene work up for this gene was new for Guys hospital at the time we had to wait 6 months for the results of biopsy, 6 months our embryos remained frozen in time. We got the call eventually to say only 1 embryo was CDH1 gene free, it survived de frosting and it was put back inside me and stuck! Our little miracle Mila was born in April 2017. We didn’t share publicly how she was conceived but those close knew. I just didn’t want to face questions around everything at the time and it’s not exactly a short explanation!
Making a sibling...
Not long after came some different questions... when will you have a second? best get trying, don’t leave it too long! Mila will want a sibling soon! You get the gist. I just smiled and said one day, one day. The truth was because we had conceived a healthy gene free baby the first time around with no spare gene free frozen embryos for siblings we knew we had to find £12,000 to do another round of IVF/PGD. The PGD part really ups the costs! In June 2019 we borrowed the money off a family member until our house move in July where we released some equity to pay for it. So in June 2019 we did it all again, i can’t remember the numbers but they were lower. I was told my fertility was declining, my eggs were aging and it wasn’t as easy. We got 1 embryo to day 5, had it tested and 2 weeks later whilst sat on a beach in Lefkada with my mum and Mila I found out the embryo had the CDH1 gene. Game over. That round didn’t even get anything suitable for transfer. It was hard, really hard, especially after the hormones from treatment, I also felt because we hadn’t been through IVF for fertility reasons I didn’t have the same right to disappointment. From there we took time to heal and grieve the loss of a baby we were so ready to have.
We decided we wanted to have another try and this wasn’t the end, so we borrowed £12,000 from family and began again at the end of 2019, treatment was scheduled for early March 2020 but alas Covid struck. We knew before the Boris announcements it was going to get bad as Guys hospital called to say it was being paused a week before I was to start injections due to resources, covid and gov instructions. It was hard to swallow as even from June to Jan my fertility showed a further decline. It felt like every month counted especially because for PGD you needs lots of good eggs at the start, numbers count because they decline at each stage and there are a lot of stages to get through. Thankfully we were able to have treatment in June and I was double dosed with hormones to try give us our best shot. The numbers weren’t great, 5 eggs, 3 mature, 1 fertilised and it didn't make it to day 5. Five short days after being pumped full of hormones and hope it was all over again, Mila kept pointing to my bloated belly after saying there was a baby in there, we were devastated for us and her. Lots and lots of tears followed, it felt like someone had died. It felt like that was it.
We were told our chances of another round working was just 10% and they even started mentioning egg donation. At 34 with no fertility issues this was a real blow. After careful consideration we decided not to do another round, apart from the huge cost, emotionally and physically it was just too much to go through again.
We thought that was it, however we decided to speak to our genetic counsellor and find out what research was being done that may impact future children if we tried naturally. There was a glimmer of hope when they mentioned gene editing and the likelihood of it being an option in around 16/18 years when a child would need testing. We discussed at length between ourselves and with close family and decided as the gene was 50/50, and with these positive advancements meaning a future child would likely not need their stomach out, that we would try naturally. Our IVF consultant said it would likely take us around a year to conceive due to my eggs and so with me turning 35 soon we decided to stop contraception and try. Well a miracle happened, we fell pregnant straight away!! It was such a shock and also such a healing surprise too, in a way it felt our journey had already taken 2 years to get here. We are beyond grateful for this little one cooking away all the nausea and exhaustion is already so worth it.
Thank you for reading...
So there it is, the truth behind the pictures, the journey we’ve been on that we never imagined when we first got married. I know we didn’t do IVF for fertility reasons but I found it hard enough emotionally without that side to contend with so for all of you facing that side too my heart really goes out to you, you are all incredible.
A message to everyone, please think before you ask ‘when are you gonna have a baby?' or 'when will you have another?’ because until you experience difficulty, or those close to you do, you won’t understand how cutting it can feel.
Did you have a difficult or unusual journey to parenthood? Share in the comments below so others don't feel so alone.