Olivia’s story

By Becky.

We terminated our very wanted and loved daughter Olivia in November 2022 at 13+6 weeks, who had Trisomy 21 (T21, Down’s syndrome). I’m sharing her story to honour her, and to help others by raising awareness and making people feel less alone.

Early Pregnancy

It was our first pregnancy after going through IVF due to my diminished ovarian reserve and unexplained infertility. I tested positive 6 days after our 3rd embryo transfer in September, and was in disbelief as I’d been bleeding; I was excited, but thought it may be a chemical pregnancy. I had lots of one-sided pains so to rule out an ectopic, we had an early first scan at 6+1 weeks, on our wedding anniversary. I had a panic attack during the scan… Looking back, I think it was mother’s intuition that something wasn’t right. Early pregnancy was difficult with bleeding, pain, anxiety, and nausea to the point I lost weight; I felt miserable and needed support from the perinatal mental health team. I had several more scans and at 9 weeks, when I had another bleed and thought I must be miscarrying, we found I had a subchorionic haematoma (SCH).

At 10 weeks we went for a private NIPT (non-invasive prenatal test, a blood test which looks at DNA to screen for common chromosome issues) and scan. I was no longer bleeding and we were so happy to see our baby waving and kicking. The sonographer thought everything looked good and said we should expect our test results to be fine, so I felt more hope and positivity, and bought a few things for the baby.

Bad News

On 4th November, at 11+1 weeks, I was shopping for prams when my phone rang. I knew they only called if it was bad news. I was told that our baby had a greater than 95% chance of Trisomy 21. I was in shock, devastated, and burst into tears. She explained that this result was fairly certain, but recommended booking an invasive test. I found out that we were expecting the little girl I’d always wanted. My world fell apart, and it felt surreal that everything else continued around me. I called my husband to break the news as he was abroad with work. I booked a CVS (Chorionic Villus Sampling) test a few days later with Fetal Medicine, who said they had never seen the NIPT give a false positive for T21. They advised that the local hospital only offers medical termination (induced labour) and said I would have to call BPAS – an abortion clinic – if I wanted surgical termination. I was shocked. I let out a primal howl on the drive home. Once home, I scoured the internet and had calls with ARC and BPAS. ARC were incredibly helpful, giving me information about T21 and talking me through my options. I started grieving that day.

Research, Testing and Decisions

My husband got home the next day, and we talked and cried. We discussed the research I’d done. We knew about the learning disabilities but learnt a great deal about T21 that we hadn’t previously known: the prevalence of heart defects, childhood leukaemia, susceptibility to infections like pneumonia, epilepsy, gastrointestinal issues, hearing and sight problems, neck instability, premature ageing and early dementia, and average lifespan of 60 years. We looked at how every developmental stage is usually delayed, and found that often the adults have a mental age of around 8 years old and frequently need to live in assisted living. We read stories by parents of people with T21, about young children who have had recurrent cancer, ones who cannot be independent in their twenties, and those who were stillborn or died very young – even babies whilst awaiting heart surgery. Even after heart surgery there could be ongoing complications.

There is a certain difficulty that comes with a grey diagnosis like T21, because it is a spectrum, and you never know how badly your child will be affected. We could not assume that she’d be healthier and higher functioning. She may never have been able to speak, feed herself or go to the bathroom by herself. I was worried she would be bullied, and never have a family or career. We are not young and hated the thought of her being in a care home when we are gone.

There was also a high chance of miscarriage or stillbirth, especially as I had already been bleeding; according to the Down’s Syndrome Association, the rate of miscarriage or stillbirth in T21 between 12 weeks and 40 weeks is about 30%, and I was at increased risk due to the SCH. I read that the babies with heart defects are 5 times more likely to die in the first year.

I then had a heavier bleed and again thought I was miscarrying. A&E wouldn’t scan me. My husband then tested positive for COVID, so isolated in our spare room; I thankfully didn’t catch it. I did not mention my husband’s COVID to the hospital as I was afraid they wouldn’t see me if they knew; I had to say he was busy with work.

The Fetal Medicine scan at 11+5 weeks showed some soft markers of Down’s syndrome: a small nasal bone, 2 heart defects which may require surgery after birth, and an absent a-wave of the ductus venosus (a problem with the shunt which carries oxygenated blood to the baby’s heart, which is associated with heart defects and adverse outcomes for the baby). I wasn’t expecting them to play the sound of her heartbeat whilst scanning; I was upset that my husband wasn’t with me for that, but it was transfixing and amazing to hear. I saw her swallowing the amniotic fluid as she was starting to practise breathing. After the scan, the consultant said she wouldn’t do the CVS test due to my bleeding as it increases the chance of miscarriage… I couldn’t believe it. She also said the CVS would be painful. She advised me to wait for an amniocentesis at 15 weeks, and advised against surgical termination, saying it could harm my uterus or cervix and further impact my fertility. I went home stunned, thinking I’d be waiting weeks for an answer then going through induced labour at 16 weeks. I would have been on a labour ward, in a separate bereavement suite, but too close to the sounds and sight of newborn living babies. They said I wouldn’t be allowed an epidural, but I knew that with my chronic pain I would need one. I was scared to go through the pain and trauma of delivering a dead baby, and scared to see her. I had also read that some babies are born alive in that situation and didn’t want to watch her die.

They had said that we could terminate without further testing if we wanted, as they were so sure of the diagnosis already, and my husband said we should do that because he didn’t want me to go through the pain of an invasive test, but I needed a definite answer. I couldn’t bear seeing my bump grow and was afraid to reach the point of feeling her kick. I told Fetal Medicine the next day that I couldn’t wait for an amnio, and the lead FM consultant agreed to do the CVS the following morning, on 10th November, when I was 12 weeks. I was grateful that she understood we needed an answer. The CVS took a while as she took two samples to ensure a conclusive result, and I was in pain afterwards for a few days. We learned that 90% of people who receive a prenatal diagnosis of T21 terminate. This consultant said surgical termination would be fine, which was a relief (I had spoken to ARC after the first appointment and they had encouraged me to ask again). We received the initial CVS result 6 days later, on 16th November, confirming that our baby had T21. This was confirmed again the following week via a karyotype test result.

My husband and I had to make our decision through a closed door as he was still in isolation; this was awful. After a lot of research and turmoil, we decided to spare our daughter from the suffering and difficulties she would have faced, and to give her peace. It was very tough making this decision after 3 years trying to conceive and doing IVF. I was worried that we would never have another baby, but tried not to focus on that and only what was best for our daughter; we personally felt it would have been selfish to keep her and watch her struggle through life. TFMR was the hardest decision, but we made it out of love, and took on a lifetime of pain and heartbreak so our baby didn’t have to suffer. We did not know how affected she would be, but were not willing to gamble with her wellbeing and knew that she would not have the quality of life she deserved. Many doctors and psychologists said we were doing the kindest thing. We then named our daughter Olivia Hazel.

The 3 weeks of limbo and anticipatory grief between the NIPT result and the termination were incredibly difficult. I was constantly on the phone making arrangements. I felt it was not right for me to go to BPAS for my own medical reasons, so they made a referral to an NHS hospital in London for the surgery. I arranged for a funeral director to collect Olivia from the hospital. I felt an extra weight and level of guilt, as I was the only one who these people wanted to talk to and sign forms; it was all down to me. I had decision fatigue and still do. I spent those weeks wishing I would miscarry so that the decision and responsibility would be taken out of my hands.

In the days leading up to the termination, once everything was arranged, I rested my phone on my tummy and played Olivia the special songs we’d chosen for her funeral. We took her for nice walks, went out for tea and cake and gave her a lovely last meal. I let myself take my first warm bath of the pregnancy.

The Procedures

The termination began with a preassessment, where the consultant explained the D&E procedure. I begged her to scan me again so that if Olivia had passed away after the CVS, I would know that it wasn’t me who had taken her life. She was still alive. The following day, I had to take a pill at home; I waited until the last minute and took it whilst holding hands with my husband and crying together, telling Olivia how much we loved her. I did not want to let her go, but knew it was for the best.

The surgery day, 2 days later on 23rd November, was extremely hard. I woke up and I was bleeding again, which can be a side effect of the medication. I was terrified that I was going to miscarry before we got to hospital. My husband was not allowed to be with me in the gynae unit, so I felt very alone. I was given two more pills on arrival. I was in pieces in the anaesthetic room, wailing and apologising to Olivia, and cried in recovery when I woke up and my baby had gone from inside me but was told to be quieter. I had no privacy as I was in a room full of other women.

I had extreme pain in the week after surgery, to the extent of screaming. After an emergency scan, I found out that I had 2cm of retained placenta and also endometriosis. They later said the tissue had passed. However, 7 weeks post-surgery during a private scan, I found out that it was still there. I had a holiday booked a couple of days later; the surgeon said I could go, and booked me in for surgery on my return. I pushed for a hysteroscopy as I wanted them to visualise and ensure they left nothing behind. The placenta hadn’t passed on holiday despite heavy bleeding, so I had hysteroscopic removal 9 weeks after the termination. Returning to the place where my baby was taken from me was so hard. I asked to have the pre-medication in pessary form, as I would have found it too traumatic to take any tablets again. I had very heavy bleeding when I got home, then ongoing pain afterwards and was treated with antibiotics for a suspected pelvic infection.

I think the services for TFMR in the UK need to change: there should be a clear and sensitive NHS pathway where the mother should have the choice of whether to have surgery or labour at her local hospital, and if opting for surgery, the partner should be allowed to be present in the waiting time before and after surgery. There should also be better aftercare (my perinatal mental health support ceased afterwards but would have continued if she’d been born, and I wasn’t allocated a bereavement midwife as I was under 20 weeks).

The Aftermath

We cremated our darling baby girl Olivia on 14th December, just the two of us and a celebrant with a few special songs and readings, and flowers. It was a beautiful snowy day and the grounds of the crematorium looked like Narnia as we were driven up to it; this seemed fitting as one of the songs we had chosen was ‘Winter Bear’. My husband carried her coffin inside. It was very sad but I’m glad we gave her the goodbye she deserved. We collected her ashes the following week and took her for a walk in one of our favourite places, where we used to walk when I was pregnant. Her ashes now sit in our living room, surrounded by keepsakes including beautiful resin shapes containing her funeral flowers, and a jar of soft white feathers which I’ve collected.

We announced that we had lost Olivia as we wanted people to know that she existed. We said we had a TFMR as I didn’t want to pretend it was a miscarriage, but we only told some people the T21 diagnosis as it felt so stigmatised – a taboo within a taboo within a taboo. Most were supportive but some made their disapproval painfully clear. Some friends and family didn’t check in at all; others did and then disappeared. The loneliness and isolation have been overwhelming at times. I’ve been grateful for the support of some lovely people, though.

In the early aftermath, I had many days where I wanted to die and be with Olivia. I’ve had to work through my trauma, intrusive thoughts and regrets about not delivering and holding her…and remind myself of the reasons why I opted for surgery, and be kind to myself. I found some peace around the surgery regret when my pain consultant later told me that when I was anaesthetised, Olivia would have been too. I couldn’t look at any babies for many months and would cry if I saw one in the supermarket. I cried when I thought about drinking alcohol at Christmas as I should not have been able to. I struggle when I see people with Down’s Syndrome. I’ve spent days and nights reading stories, statistics and scientific papers even months later to feel more at peace with our decision. I still feel guilt and immense sadness, but I know that we made a loving choice.

I found it invaluable reading and listening to podcasts about TFMR, and joining support groups to talk about it in safe spaces. We had some counselling sessions through a charity (Petals) and I have had EMDR for my PTSD. I found that there were not many public stories about TFMR for T21, so I hope that this story is helpful to some people looking in future. I felt that it would have been an easier process if we had a diagnosis which was incompatible with life. I found it very hard coming to terms with a grey diagnosis involving so many unknowns, and it was hard facing hurtful comments and judgement from some people who disagreed with terminating for T21. It is nobody’s place to advise what a couple should and shouldn’t do regarding their pregnancy, and I have learnt that nobody can really say how they would act until they are in the situation themselves: I never thought I would terminate for Down’s syndrome, but then I did. I believe many of those people are not aware of the extent of the medical conditions faced by that community – just as we were not until we did the research. Not to mention the learning disabilities. Many people just think of those with T21 who are the smiley babies or high functioning adults. You don’t see the ones who died young or cannot leave the house.

Some people also wrongly believe that people who go through TFMR do not want or love their baby (I’ve read many comments where people say they “would love the baby regardless”) – this is so wrong. We loved and wanted our baby, and decided to end her life so she would not suffer and would only know love and peace. She felt no pain. It has been devastating and traumatising, and the hardest decision we will ever make, but this was the biggest act of love we could perform for Olivia.

At least 5000 TFMRs take place in the UK each year. It is 3 times as common as stillbirth and neonatal death combined. Yet very few people talk about it. I don’t want our daughter’s story to be a dirty secret. I read a great quote by Brené Brown:

“Shame cannot survive being spoken. It cannot tolerate having words wrapped around it. What it craves is secrecy, silence, and judgment. If you stay quiet, you stay in a lot of self-judgment.”