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Heartbroken: Hilary Freeman had to terminate her pregnancy when she learnt her baby had a rare chromosome condition

My daughter Elodie is playing with her toys, smiling and gurgling at me. She is just starting to crawl and soon she will be saying her first words. I wonder if they will be in English or in French (her dad, my partner Mickael, is French). I also wonder if she’ll be practical, like him, or bookish, like me.

I am torturing myself again. This is just a fantasy that will never become reality. Elodie will never talk or gurgle in any language, never smile, never play.

For two days before she was born last month, she died in my womb. I was 23-and-a-half weeks pregnant.

But it wasn’t a miscarriage. Just a week before she was born, after two months of tests, soul-searching and discussions with doctors, charities and Mickael, I took the heartbreaking decision to end my pregnancy and her life, to become her murderer instead of her mother. It’s the hardest thing I have ever done and, I pray, that I will ever have to do.

Elodie was our first, much-wanted, special baby. Conceived the first week we started trying, a few months shy of my 41st birthday, it seemed she was meant to be.

The first time I knew anything could be wrong was at eight weeks, when a scan showed my embryo and gestational sac were smaller than they should have been. I was warned I might miscarry at any moment.

But, against all odds, Elodie kept on growing and her heart kept on beating strongly. She was a fighter; she wanted to live. Then, at 12 weeks, routine blood tests showed markers for Down’s syndrome. Still optimistic, I decided to have further screening and underwent a procedure called a CVS, in which cells are taken from the placenta and tested for chromosome problems, but it was unsuccessful: my placenta was too thick and strangely textured.

At 16 weeks, a second CVS revealed, to my relief, that my baby didn’t have Down’s syndrome, or the other common chromosome conditions.

The consultant concluded that the problem lay solely with my placenta, which wasn’t functioning properly. I was warned my placenta could fail at any time and that Elodie might not make it. If she did, she would be very small and premature.



Termination was an option, the consultant said. I refused: how could I kill a wanted baby, who might survive and be OK? By now I knew my baby was a girl and I already thought of her as a little person. She was Elodie, the name we’d chosen for a girl the moment my pregnancy test proved positive.

But worse news was to come. Three weeks later — by now I was 19 weeks pregnant and feeling Elodie moving inside me — I received a shocking phone call from the foetal medicine consultant. Trisomy 2 cells, which are indicators of a potential chromosome problem, had been found in my second CVS placental sample.

I would need an amniocentesis to see if the baby was affected. And so, for the third time, a needle was passed through my abdomen into my womb to take my baby’s cells. Each time this happened, I risked miscarriage. Yet, each time, Elodie survived and continued to grow.



'Every kick inside me felt like a plea: "Please, Mummy, don't kill me." I cried myself to sleep and cried the moment I woke up'

I was 22 weeks pregnant when I finally learnt the truth, in a phone call from a foetal medicine midwife.

She said she was sorry, but the full amniocentesis results showed that Elodie had a chromosome condition called Trisomy 2 Mosaicism (an extra copy of chromosome two), which is so rare that, according to the charity Unique, there are only five children known to be living with it in the world, and only seven live births recorded in medical literature.

Each of the surviving children has severe, but different, disabilities: brain damage, feeding problems, heart and kidney problems, and physical deformities. Chromosome two is so fundamental to human life that, usually, a problem with it causes spontaneous early miscarriage.

But, in a tiny handful of pregnancies, the foetus continues to develop. Nobody knows why this happens. Nature, I have learned, doesn’t always have a plan. It can be random and cruel.

The doctors and midwives at the top London teaching hospital were as shocked as I was. All any of them could say was that she was not growing as she should be and that the combination of her chromosome condition and my failing placenta (for which we now had an explanation) meant that the odds were stacked against her.

If I chose to continue with my pregnancy, it was very likely that she would die anyway, either before birth or shortly afterwards. I was devastated, unable to eat or sleep.



Tough decision: Hilary with her partner Mickael who has supported her throughout their ordeal

The only positive news was that this was something so rare, that if I tried for another baby, it could never happen again.

The decision about what to do next was mine, and mine alone. There was no rush to decide: with my baby’s problems, the legal limit for abortion of 24 weeks did not apply.

The doctors all made it clear they thought a termination was for the best. Mickael said he’d be supportive of whatever decision I made, but he was also clear that it wouldn’t be fair to let our baby suffer.

When I asked him if he’d be able to cope with a severely disabled child, he was very honest. ‘I really don’t know,’ he said. How could anyone know?

But when you have a baby moving inside you, and when you are flooded with hormones, it’s hard to be rational.

You start to convince yourself that the doctors might be wrong and that, even if they aren’t, it doesn’t matter what problems your baby may have, you will love her anyway.

'Giving birth to Elodie was traumatic and extremely painful. In a way, I felt I deserved the pain'

Added to this, I was told what a late NHS termination involves. It is not a painless or quick surgical procedure, performed under anaesthetic. The process takes four days.

First, potassium chloride — the chemical used in U.S. executions — would be injected through my abdomen into Elodie’s heart.

This would ensure that she was not born alive. It is known, too horribly, as a feticide. Two days later, I would come back to the hospital to be induced. I would then have to go through labour and give birth to my dead baby. Afterwards, I’d be given tablets to dry up my milk.

For days after the diagnosis, I prayed I would miscarry, that nature would make the decision for me. But nature, as I said earlier, is cruel. My belly kept expanding and Elodie kept kicking. Each kick felt like a plea: ‘Please Mummy, don’t kill me.’

I cried myself to sleep, and cried the moment I woke up.

One day that week, I was so stressed I was convinced Elodie had stopped moving inside me.

An emergency scan revealed my mind was playing tricks on me: not only was her heart still beating furiously, but she had grown again.

In the end, two people persuaded me that my only option was to terminate. The first was a consultant geneticist at Great Ormond Street Hospital who made it very clear that if I continued with my pregnancy, Elodie’s life would be, to borrow from Thomas Hobbes, ‘nasty, brutish and short’.

For however long she survived, he told me, she would suffer physically and emotionally. He assured me she would not feel the feticide and that her death would be instant.



Traumatic: 'There can be few things in life more painful than choosing your baby's funeral music and readings while she is still kicking inside you,' Hilary said (posed by model)

On the other hand, being born alive — going through a delivery — would cause her great trauma.

The second was an old friend, who has severely disabled twins, born very prematurely. She reminded me how much her children have suffered during the nine years of their lives, and how much the rest of the family has suffered, too.

She said that as a good mother, I could only make one decision for my baby: to end her life to prevent her suffering.

Weirdly, I can’t recall telling the hospital of my decision, but I must have, as arrangements were made for the following week. For the next few days, it felt as if Elodie was on death row. I started planning for her funeral, which the hospital kindly agreed to arrange and pay for through their charity.

There can be few things in life more painful than choosing your baby’s funeral music and readings while she is still kicking inside you.

I also had to choose the outfit she would wear in her coffin.

Through a website specialising in clothes for premature and stillborn babies I bought her a babygrow, blanket, hat and booties, plus three miniature teddy bears: one for her, one for me and one for Mickael.

I wondered if on some level she knew what I was planning and begged her to forgive me.

On Monday, September 24, I found myself lying on a hospital table, while the foetal medicine consultant injected my baby’s heart with the deadly chemical.



'Now, all we have are the photos I took and the handprints and footprints the midwife made for us'

The atmosphere in the room was sombre and respectful: doctors don’t enjoy performing these procedures.

I wasn’t allowed to watch, even though I felt compelled to; the ultrasound screen in front of me was switched off.

I closed my eyes, clutched Mickael’s hand and cried until it was done. Elodie was kicking me right until the end. When she stopped, I realised I’d never feel her move again.

Cruelly, I then had to wait 20 minutes in a cubicle before having another scan to make sure her heart really had stopped for good.

On the other side of the curtain lay another sobbing woman, whose face I never saw. She had just been told that scans had shown her baby had a brain problem and she needed further tests. I recall feeling irrationally jealous: at least her baby was still alive.

For the next two days I walked around zombie-like, carrying my dead baby inside me.

Nothing was supposed to happen until I was induced on Wednesday afternoon, but on Tuesday night I began to suffer cramps.

By Wednesday morning I was bleeding heavily and having contractions. The hospital said to come straight in.

Dealing with her loss: Hilary has moments of doubt and guilt but knows she did the right thing (posed by model)

Mickael and I were put in a side room on the labour ward, away from the other mothers and out of earshot of their crying, living babies.

Giving birth to Elodie was traumatic and extremely painful, despite the kindness and respect of all the medical staff.

In a way, I felt I deserved the pain of each contraction as retribution for taking my baby’s life — a reaction I’m told is not unusual among women in my situation.

My dodgy placenta abrupted (detached from the uterus wall before the baby was delivered) and I lost almost two litres of blood.

Elodie was born sleeping — my preferred euphemism — at 11.50pm on September 26 this year.

At just over a pound, she was far bigger than I’d been led to expect, and she was perfect, absolutely beautiful, with her father’s mouth and my hands.

I know that external appearances often belie what’s going on inside, but it was hard to believe there was anything wrong with her. She looked so peaceful that seeing her has taken away my fear of death.

The midwives cleaned and dressed her (the clothes I’d chosen were too small), and then brought her back to us. We were allowed to spend as long with her as we wished.

We talked to her and held her and admired her tiny fingers and fingernails, just as you would any newborn baby.

For a while I felt euphoric — another of nature’s cruel hormonal tricks — until I realised that she was growing cold and it hit me that she would never get warm again.

I saw my baby just twice more.

Later that night, I woke up shivering with cold and shock, opened my eyes and saw the empty cot, which had been left next to my bed.

Struck by the reality of what had happened, I became hysterical and could only be comforted when Elodie was brought back to me.

The last time I saw her was the following day, just before we left the hospital.

Despite being kept in a cold room, Elodie didn’t look the same any more; her skin had begun to whiten and wrinkle, and her mouth was lolling open.



WHO KNEW?

Abortions can only be carried out after 24 weeks in order to save the mother - or if the child has serious abnormalities

We knew then that it was time to hand her back and to say goodbye forever. Now, all we have are the photos I took and the handprints and footprints the midwife made for us.

The memory of Elodie’s face is fading and I can barely remember what it feels like to hold her in my arms, or to feel her kick in my belly.

Elodie’s funeral at Golders Green Crematorium, a few days after her birth, was beautiful, but incredibly tough. Only Mickael and I attended: it felt too raw, too private, too personal, to invite anyone else.

Seeing her tiny coffin was heartbreaking. Because she was less than 24 weeks gestation when she was born, Elodie’s birth and death will never be registered.

The name plate on her coffin and the funeral certificate are the only places I will ever see her name officially printed. That’s one of the reasons I wanted to write this article: to see the name Elodie Lorinquer in print, to record her existence.

When I picked up Elodie’s ashes after the funeral, I felt my womb contract again.

We’re going to scatter her ashes in Nice, France — where she was conceived — at a beautiful and deserted beach next month.

The hospital gave me a memory box, in which I will keep Elodie’s photos and prints, her scans and her hospital identity bracelet.

One day, I hope Mickael and I will be able to tell her siblings about their big sister, who was too special for this world.

Although I still have moments of doubt and guilt, I know I did the right thing. And whatever you want to call it, I don’t think of Elodie’s death as a termination. To me it was a stillbirth. Nature got it wrong and needed help.

Elodie will never suffer now: she only ever knew love and peace.

The charity ARC provides support for women making decisions after antenatal tests, 0845 077 2290