We said goodbye to our angel baby back in July 2015, TFMR due to T21, or more commonly known as Downs Syndrome.
I’m 32 years old, living with my husband and Rainbow in London. I created this blog so that I could share my story, and most importantly, document the journey of rebuilding a life beyond.
Connecting with other women, who have been through a similar experience, was the first step for me in accepting and overcoming.
My husband and I married in 2014. We both always wanted children and we had agreed shortly after our honeymoon that we would start trying. So I came off the pill and within a month I was pregnant, much to my husband’s surprise!
From early on we spoke openly about ‘not to get our hopes up’ – referring to miscarriages. I knew it was important to acknowledge this but deep down I reassured myself it wouldn’t happen to me.I was a healthy 28-year-old, non-smoker and recently ran a half marathon. My body was ready.
Nine weeks on, I was a bridesmaid at a friends wedding. I thought, with only a few weeks till the scan, I confidently told a few people my good news. I had kept it a secret, apart from telling my parents, but it felt so nice to be congratulated and to be greeted with such excitement. The reason I had kept it to myself was because you never know – people say, ‘not until after the first scan.’
We then had our ten days on holiday, spending the whole time talking about having a baby, whether it would be a boy or girl – we hoped for a girl! How our lives would change and what names did we like??
When I look back, I think about all the time that was invested in being pregnant, for both of us. It was a done deal. The next January we would be having a baby.
Late in June, the day of the scan came. I remember thinking I would walk to the hospital, grab a sandwich on the way and meet my husband in a nearby park to have lunch. It was a glorious day.
I remember thinking the hospital was pretty run down and tried to imagine myself being here when I would go into labour. We were greeted by the sound of muffled baby heartbeats. The sound pounding out of the individual scanning rooms where the doors were ajar – the promising sound of new life. A sound that still chokes me today.
I went for my blood tests. A little while later we were called in for the scan. Being a research hospital, the room had a group of young students – polite and courteous but no congratulatory greeting as they were there purely on medical terms. That baby, or ‘foetus’, could be an organ or a hernia to them.
Whilst the sonographer fired up the scanner, I was asked the millions of questions of my past history for pregnancy. My husband sitting silently next to me as I lay on the bed with a bare belly awaiting the cold gel and a stranger’s hands.
I’m not sure how most people react at their first scan. I imagine it’s a mix. Some couples are laughing and joking, wondering what the gender is, commenting on its large shaped head. And some couple, like us – the more cautious, uptight kind, sit holding their breath waiting for the good or bad news.
As the sonographer traces my belly with the ultrasound the anxiety starts to build up as the silence in the room grew louder. The sonographer liaises with another doctor.
An exomphalos is what they suspected. They pointed to the scan and showed us a cloud appearing near the abdomen of the baby. “It’s where part of the stomach organs grow outside of the body”, the consultant said. I thought that didn’t sound good.
They sent us away as we waited for the blood results. My husband and I sat outside the hospital silent and on our phones, googling the prognosis. It was treatable which gave me some comfort. There and then I was determined that everything would be ok – already having visions of trips to Great Ormand Street when the baby arrived, having absolute faith that this must be quite a common condition and totally treatable.
We returned to the scan room after around 2hrs and a senior doctor was waiting for us. He told us he had looked at the scan and bloods and it was too early to determine anything, so he wanted us to come back in 2/3 weeks.
I felt optimistic. Apparently, the exomphalos could disappear – the stomach could retreat back into the baby’s body. Either way, there were options and neither meant I was going to lose the baby.
As the senior doctor left the room, the sonographer came over to me shuffling some papers. “Your bloods have come back high risk so we would like to offer you the Harmony Test”. Right there and then I didn’t think much of the blood tests, my mind was on this poor baby’s tummy. I agreed to the test, gave more blood and they told me the test should be with us within 2 weeks. We left the hospital pretty shell-shocked at what we had just been through.
Right from that point, I think the bitterness began to set in. I was upset, of course, but I was mostly angry.
We had another holiday booked which covered the period we had to wait for the test results. We spent the time being openly positive but secretly thinking the worst. I couldn’t help but think naively that surely, just surely, everything was going to be fine and in six months we would be having our little bundle of joy.
I remember we got the call as we were collecting our baggage at Gatwick. Amongst the crowds and tannoy announcements, I answered the call – but I asked before she spoke any further, whether she could give me a call in an hour.
My husband and I rushed through arrivals where we were met by a friend who came to collect us. We answered the questions about our holiday and wore smiles on our sun-kissed faces. I felt so sick, thinking, very shortly I’m going to be bursting into tears – either a deep sadness or absolute relief.
“Two in one chance of T21/Downs Syndrome”, is what the female doctor said. “Sorry… can I just check that?” I replied.
I think I even let out a laugh of disbelief. They are not the odds you want to hear – there’s no hope there. The doctor asked about further tests and asked me to come in the following day to discuss a CVS (chorionic villus sampling). I agreed, hung up the call and whimpered for my husband.
We spoke of nothing else for the remaining hours before our follow up appointment. We had come to the conclusion that the odds were against us and that we should ask for a termination without any further tests. In our eyes, not only did we have the T21 to contend with, we also had the exomphalos hanging over us.
At the hospital, we went straight to a midwife as we had refused the appointment with the consultant. She spoke to us about our decision and there was some confusion as she was under the impression it was because of the exomphalos and she wasn’t aware of the T21 results. She urged us to speak to the consultant just so we had discussed everything before we made our final decision.
The consultant wanted to check the baby with an internal scan. This was the first glimmer of hope, “In some cases, the exomphalos can reduce as the baby grows”, she said. And it did. I felt an ounce of joy, throwing the T21 out the window. Then she suggested we go ahead with the CVS so we can know for sure abut the T21. So I did.
I remembered getting the bus home with my husband with this little fire of hope burning in my tummy. As though the little butterflies were rising from the flames. I was half convinced again that everything would be ok, after all, 2:1 was also 50%, or a flip of a coin.
In the end, it wasn’t meant to be. The test came back positive for T21 and after 16 weeks we said goodbye to our little Angel.
What happened next
I didn’t want to write about the termination part. I just want to say, for all those women who have faced a TFMR, who have had to go into a hospital or a clinic and end a much-wanted pregnancy – You are a truly incredible. To find the strength and swallow your fears, in such a selfless way, will change who you are forever.