"I left the hospital the day after delivering my precious boys. During early labour I was handed books on funeral homes. I was told I needed to arrange a funeral for twin B as he was considered a life lost. Twin B would have a birth and death certificate…unlike twin A, who I was told could be buried in my garden if I wish. This blew my mind. "
Saturday the 19th of September 2021 will mark two whole years since I met and lost my beautiful twin boys.
My story is quite a unique one. My story is quite a unique one. I had to make the devastating decision to TFMR twice in the same pregnancy.
I was so excited to be pregnant with twins (being a twin myself, I knew how special that could be). However, my pregnancy was hard! I suffer from an Autoimmune immune disease that did not do too well whilst I was pregnant. I was in and out of hospital my whole first trimester.
Like any other expecting parents we were so excited for our 12 weeks scan…so excited that we took my Mum along on the day of her birthday as a special little gift.
This is where our nightmare starts.
During this scan they had picked up that twin A (Raphael), had a rather thick nuchal fold and that twin B’s (Gabriel), was slightly thickened.
We were sat down and told statistics. For twin A ‘1 in 300 chance of Downs Syndrome…but you are young, so I wouldn’t worry too much’ and for twin B ‘1 in over 1000 chance of abnormalities, I wouldn’t worry at all’.
After receiving these statistics we decided to go ahead with NIPT testing. During this time I had been admitted into hospital due to my condition worsening. We had made a plan with our OB that I would stay admitted until it was safe for me to go home. We had also decided after days of back and forth that we would wait until the NIPT test came back and then converse about our options. We already knew that an amnio needed to be done if TFMR was an option (to determine which twin was unwell and where they were positioned).
Before falling pregnant I had no idea you could terminate one twin, whilst the other thrives. I didn’t know what an amnio was and I never imagined what the next month would entail.
The NIPT test came back positive for a large chromosome 21 abnormality (Severe Downs Syndrome). Our biggest fear had come true, Baby A was not compatible with life.
We had to wait until 16 weeks to be viable for an amnio. This would determine both babies positions and show us more in depth detail about baby A’s condition. I knew the risks associated with this procedure but at the time felt truly numb. The dreaded wait from week 12 to week 16 was awful. I wanted so badly to bond with my babies but knew that it may end in heartache regardless.
At 16 weeks the amnio results yet again showed just how unwell my poor baby was. Within the space of just a few hours we were booked in for an amnio style termination of baby A. The hardest decision of my life to date (at this point).
The process was a blur, one I still sadly have PTSD attacks about. I remember the needle being placed and I remember being told to look away as he’s tiny little heart stopped beating.
I can’t explain the feeling of knowing your child is gone but still having carry them with your living child kicking away. I felt like I was suffocating within my own body. I was a coffin for my angel baby all whilst trying to connect and thrive with my remaining twin. I remember nights where I would literally want to rip my stomach open and get him out. This wasn’t because I didn’t love him, it just felt so surreal that he was still in their. I felt like i couldn’t properly grieve my loss or celebrate the life left inside all whilst knowing they lay pretty much side by side.
Over the next few weeks I would have nightmares where I vividly remember being told twin B was also sick. I would wake up screaming and thinking why would my brain think of such an awful thing…little did I know…this was about to be my reality.
I was just about to turn 19 weeks pregnant when I got the dreaded phone call. We needed to go into hospital to do further genetic testing. My OB wouldn’t tell us why, but he wanted my husband and I tested.
It took just under a week for these tests to come back…and looking back I should have known what was coming after I received a phone call on a Saturday afternoon to come and see my OB outside of work hours in his rooms…no good news starts in this way.
As I entered my OB’s rooms I could tell by the look on his face that something was wrong.
He told us ‘further testing on the amnio show twin B has the largest deletion of chromosome 17 I or my geneticist colleague have ever seen’. Twin B was no longer compatible with life.
I was booked in at 20 weeks and 3 days to induce labor….and there I was again, the dreaded wait. 5 long days where I sit in limbo. Feeling my baby kick but knowing that soon he would be gone too. I was broken.
I was admitted the evening of the 18th of September to start the induction process. I’d never really thought about what child birth for me would look like and I didn’t know what to expect (especially in these circumstances). I was briefed that I may need an emergency D&C (because twin A had been gone for almost a month at this point, his placenta was suspected to be too delicate to pass as a whole). I was also told that I would be able to meet twin A and B, I was warned that twin A would look significantly different to twin B, as his growing stopped at 16 weeks. I also remember being warned that they both may have visible abnormalities and that twin B may cry during delivery. No words can describe the heart break felt during this conversation. I knew I was making this decision for a reason but I felt like a monster.
Labor was long and painful (as expected). I pushed through without an epidural as I didn’t feel I deserved one. In the evening of the 19th of September 2019 I delivered my beautiful angel boys. Twin B, Gabriel was born breathing…he lived for 40 precious and confusing minutes. Sadly I was whisked away into an emergency D&C (as suspected I would be), to remove retained placenta. I wish I would have gotten just a few more minutes with my little guy.
I left the hospital the day after delivering my precious boys. During early labour I was handed books on funeral homes. I was told I needed to arrange a funeral for twin B as he was considered a life lost. Twin B would have a birth and death certificate…unlike twin A, who I was told could be buried in my garden if I wish. This blew my mind.
"Leaving the hospital with an empty belly and empty arms was the worst feeling I have ever felt in my entire life. I do not wish that kind of hell on anyone. "
I can’t remember how long I cried for…but it felt like weeks…maybe even months.
We had announced our pregnancy to the world and now we were having to tell people that I was no longer pregnant.
I felt like no one would understand my decision to terminate. I felt like I would be seen as a horrible monster, so instead we told the world our angels were born stillborn.
