Sian’s story

Bringing home siblings for our son was something we had always imagined. We’d been lucky enough to fall pregnant relatively quickly with him and experienced a smooth pregnancy and birth, so once the dust of COVID lockdowns had settled, we decided to TTC for the second time.

Fast forward to August 2023, with a first-trimester missed miscarriage and a heap of pregnancy after loss anxiety behind us, we walked into our 20-week scan, excited to find out the gender of our rainbow baby. We’d already planned how to reveal to our 4-year-old old he had a sibling on their way, and an Instagram post was sitting waiting in my drafts.

I walked out of that scan room a different version of myself. They couldn’t determine our baby’s sex, but they did explain that our baby was extremely sick. The ‘low risk’ screening result we’d received now looking not so low risk after all. Thankfully, an appointment at fetal medicine quickly followed, and within 36 hours, we’d heard the words ‘Cystic Hygroma and Hydrops’. Sadly, we’d also learnt that it was highly unlikely our baby would survive birth, let alone make it home.

Within the first week, I’d faced my lifelong fear of amniocentesis, which thankfully was more gentle than I’d expected. This test would hopefully give us a reason as to why these defects had occurred and confirm the sex of our baby.

Within a few days we discovered our baby was a little boy, and that he had Trisomy 21 (Down’s syndrome). We’d previously discussed how we potentially felt about this ‘grey’ diagnosis, but in our case, the diagnosis gave us answers and wasn’t something we thought too heavily about.

As his hydrops increased, my health deteriorated, and the next few weeks, we faced numerous hospital visits between scans and fainting episodes. Although we knew the decision we had to make, a low-lying placenta made planning for his arrival more difficult. Thankfully, at 23 weeks, my placenta moved, and we decided it was time to say goodbye- it was the kindest thing for him and our family.

I was offered sedation during the feticide procedure, which I’m glad I accepted. I’m unsure as to whether the hydrops altered this, but it felt like a long and difficult process. I was left with an area of scar tissue from this procedure, which I’ve now had a star tattoo around. It felt important for me to mark this moment; however difficult it was, it was the last time our hearts beat together.

Our son was born a few days later at 23 weeks and 5 days after an intense labour. Comparing it to my living son’s arrival, it was clear to me how much I feared meeting our baby and the grief that would follow. We’d been prepared at scans that our son wasn’t in a good way, and we may wish to consider not meeting him. For me, this wasn’t an option; I wanted to meet my son.

On delivery, he was taken away and it was decided we should wait a while to meet him, due to the hydrops. Thankfully, a few hours later, he was brought to me, and I finally gazed upon my beautiful little boy. However, I was encouraged not to touch or hold him due to his delicate skin, which is something I will always regret.

Our time together was short, and after a few hours, we walked out of the hospital with empty arms and broken hearts.

Grief was hard because our love was so strong, but after 6 months, we knew we had to try again. Our desire for a bigger family hadn’t diminished. Another first-trimester miscarriage followed, and in March 2025, we finally had our fifth positive test.

This pregnancy was different from the start. I had sickness, I had intense cravings, but I also struggled mentally. I was convinced I’d miscarry and screamed tears of joy when a heartbeat was found at our first scan. I accepted a referral to the mental health team because I felt numb, empty and void of joy. Pregnancy after loss is incredibly difficult.

Thanks to the recent change in NHS guidance, we were able to have an NIPT test as a precaution at 10 weeks. We had been told numerous times that our previous losses were most probably ‘bad luck’ and that lightning doesn’t often strike twice, in terms of TFMR.

Unfortunately, the NIPT test discovered our baby also had T21.

After spending nearly two years engaging in the TFMR community and thanks to Arc events, meeting other parents who also had this diagnosis, we knew how varied the outcome of this diagnosis could be.
We opted for a CVS this time. Personally, I found this more difficult than the amnio. During our early fetal medicine scans, it was noted that our baby had more obvious signs of T21 compared to our son, and the beginnings of fluid buildup again.

Although we were at the earlier stages of pregnancy this time, we were acutely aware that potentially we’d be in the same position at 20 plus weeks again. After much soul searching, we decided to say goodbye to our daughter, and she arrived into my arms at 18 weeks and 4 days.

In the weeks leading up to her arrival, we made the decision to fill what was left of our time together with joy. We explained to our now six-year-old that yet another sibling would be born, but not make it home, and as a family we did ‘normal’ things such as announcement pictures, gender reveal and choosing her teddy.

Her birth was beautiful and holding her as soon as she arrived is one of my most precious memories. We spent two wonderful days together, taking pictures, singing to her, reading books, and just being her Mum. Our son joined us at the hospital to meet her, and it gave me a beautiful glimpse into how life should be.

My biggest fear was going through TFMR again, but actually, my daughter’s pregnancy, birth and time we spent together have helped soften the raw edges of my grief. She’s helped me take a step forward and confront the aspects of my son’s loss that hurt me so deeply.

I really hope nobody else ever has to go through TFMR twice, but if you do, I hope you experience the same peace as I have.

@flicks_and_red_lips