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Wednesday 4 October 2023 Dublin: 15°C
'My baby was never going to look into my face, or yawn or cry for food. She was still'
Grace was with me for just 28 weeks. She was diagnosed with a fatal fetal abnormality but she left me with a lifetime of love, writes Tracey Smith.

ON THE 19TH of March 2014 I spent 12 hours with my fourth baby and the person that would change my life.

I was 22 weeks pregnant when we found out that Grace was terminally ill. She had thanatophoric dysplasia.

This condition is a skeletal disorder. At 23 weeks Grace’s development was more like a 12 week baby’s. The fatal part of this condition is because the chest cavity doesn’t grow big enough to fit the heart and lungs.

After birth, when babies try to inhale for the first time, my baby girl would die immediately as her chest cavity would crush her lungs. I’m sorry if this upsets anyone reading but unfortunately you cannot pretty up this condition.

I couldn’t bear this to happen my baby

My dad had died two years previously from lung cancer and I watched him take his last breath. How could I watch my tiny baby struggle to breathe and then pass away? I couldn’t.

I asked when I would be induced and my consultant sympathetically told me they can’t induce early if there is no risk to the mother. It’s against the law in Ireland.

My baby was dying, her movements were weakening and she would inevitably die from respiratory failure. But this wasn’t enough to stop her hurting anymore. I had to be at risk.

I was at risk everyday. I was at risk when I met people asking if I had my bits bought for the baby, asking how long I had left and how the twins must be excited for a baby brother or sister.

I would nod and smile, knowing the baby in the bump they were admiring was not going to be sleeping in her brother’s moses basket. I spent four weeks nodding along to people’s excited questions.

I was slowly losing my mind

I couldn’t be induced at home with my family around me. We travelled to Liverpool on Paddy’s weekend among hen parties and revellers.

We arrived at Liverpool Women’s Hospital, where the midwives took over my care. They were angels to me and my little girl.

I remember saying to my husband that morning before the final scan, they may have made a mistake in the two hospitals we were in in Ireland. We might get good news.

The professor scanned me for over an hour and he confirmed the diagnosis, along with the devastating news that Grace’s lungs were no longer in her chest cavity. He couldn’t find them, so they were either crushed already or hadn’t developed. I knew having an early inducement was 100% the right thing to do at that moment.

Grace’s birth

After 36 hours of an agonising labour, pain I would gratefully repeat over and over again, Grace arrived silently into the world at 4.45am. She was stunning, the most beautiful little angel, with a button nose and chubby cheeks. She had dark hair and gorgeous plump lips.

Her face was perfect and her body was tiny. She was so peaceful. I have never experienced feelings like that before. I was holding my child but she was never going to look into my face, or yawn or cry for food. She was still.

We held her all day long and talked about what life she would have had. A priest came and gave her a little blessing.

We named her Grace Saoirse because she was free. We had a nap that day with her beside us and dressed her in a beautiful outfit the midwives gave us. The outfit I had brought was way too big.

Saying goodbye

We were booked to fly out the next morning. The hospital had a little nursery made up for Grace. It had a cot and a dressing table, teddies and a beautiful mural of angels on the wall.

After we said our goodbyes, we placed her in her cot all wrapped up cosy with her teddy. My midwife came in and took over looking after her.

I sometimes can’t believe I actually had to do this. I had to leave my baby in another country.

Grace’s funeral

We arranged Grace’s funeral, the prayers and the music I wanted played. It took place in a church in Liverpool. The priest who blessed her said the mass and a midwife attended. We couldn’t go because we simply couldn’t afford to.

I had to wait three weeks for Grace to come home. Her ashes arrived by courier.

A man knocked at my front door with my daughter’s remains. Did I actually have to sign for my daughter’s ashes like an order from ASOS?

The next few months were a blur. I can still feel the pain and darkness of those months, the feeling of drowning and anger. I still go through these feelings, but I’ve learned how to control them and cope with them.

Grace’s ashes sit on a shelf in our living room and we bring her into our bedroom at night. There are photos of Grace in every room of our house. I sleep with her teddy every night.

Grace is part of our family

Grace is very much part of this house, like any of the other kids. Unfortunately due to the cruelty of this country none of her family could meet her and say goodbye.

She blessed us with Callum almost a year after she passed. She gave me Callum when I didn’t even realise I needed him.

She’s my motivator, my soul, my heart, my courage, my bravery and my eyes. She’s changed the way I look at things. I’m not the same person I was before Grace. I miss that Tracey but I’m learning to love the one I am now.

This is Grace’s story. She was with me for just 28 weeks but she left me with a lifetime of love.

Tracey Smith is a mum of five kids. She recently returned to work in marketing after being at home with her children for seven years. She blogs at Mum’s Makeup Bag

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