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‘How could I watch my tiny baby struggle to breathe and then pass away? I couldn’t’


By Amanda Cassidy
23rd Mar 2020
‘How could I watch my tiny baby struggle to breathe and then pass away? I couldn’t’

It’s been almost six years since Tracey Smith lost her baby daughter Grace. Here she recounts the story of her baby’s heartbreaking diagnosis


Trigger warning: This article contains descriptions of baby loss that some readers may find distressing.

“On the 19th of March 2014, I spent 12 hours with my fourth baby, my second daughter, and the person that would literally change my life.

Our world stopped when, at 22 weeks’ pregnant, we found out that Grace was terminally ill.

After many, many examinations by professors of fetal medicine, we were told that she had Thanatophoric Dysplasia — a condition that meant her long bones were measuring short (at 23 weeks Grace’s were measuring 12 weeks). The fatal part of this condition is because it causes the chest cavity not to grow enough for her heart and her lungs.

So ultimately, upon birth, when babies try and inhale for the first time, my baby girl would die immediately from respiratory failure as her chest cavity would crush her lungs.

I couldn’t bear this to happen to my baby.

My dad 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.

Alone

I asked when I would be induced and my consultant sympathetically told me that they (at the time) couldn’t induce early if there is no risk to the mother as it’s against the law in Ireland. (This has thankfully since changed, legally)

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 every day that I met people asking if I had ‘my bits bought for the baby, how long have you left, the twins must be excited for a baby brother or sister’.

I nodded and smiled along, with my heart breaking knowing that the baby in the bump they were admiring was not going to be sleeping in her brother’s Moses basket. I spent four weeks like this, nodding along to people’s excited questions.

I was slowly losing my mind.

Because of the fact that I couldn’t be induced at home with my family around me, I had to go somewhere where they understand what my baby and I were going through.

We travelled to Liverpool on Paddy’s weekend that year, amongst hen parties and revelers. We arrived at Liverpool Women’s Hospital where the midwives took over my care. They were angels to me and my little girl.

Pain

I remember saying to my husband that morning before the final scan to check Grace, that maybe they made a mistake in the two hospitals we were diagnosed in Ireland. Maybe, I dared to believe, we might get good news, her chest may be growing and allow her organs to grow?

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 just didn’t develop.

I knew at that moment that having an early inducement was 100% the right thing to do for that tiny baby.

After 36 hours of agonising labour, pain that I would gratefully repeat over and over again, at 4.45 am, Grace arrived silently into the world.

We named her Grace Saoirse because she was now free

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 looked so peaceful.

I have never experienced feelings like that before. Here I was holding my child and feeling content, but she was never going to look into my face, or yawn or cry for food. She was still. Perfectly still.

Free

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 now 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 brought was way too big. She was wrapped in a teddy that her sister gave her and a teddy Grace gave me.

At 5 pm we had to leave her, 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, last cuddles and kisses to her, we placed her in her cot all wrapped up cosy with her teddy.  My midwife came in and told us they would look after her.

A man knocked at my front door with my daughter’s remains waiting to be signed for like an order from ASOS.

I sometimes can’t believe I actually had to do this, that I had to leave my baby in another country. How cruel it is that we had to do this? It actually leaves me speechless.

We arranged Grace’s funeral. Everything from the prayers right down to the music I wanted to be played. It took place in a church in Liverpool and the priest who blessed her presided over her funeral 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 waiting to be signed for like an order from ASOS.

Cruel

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 can still feel them because I still go through these feelings, but I’ve learned how to control them and cope with them now.

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

She was with me for just 28 weeks but she left me with a lifetime of love.

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

She blessed us with our son 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 gut, 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 version of myself, 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. Losing her could have been the reason I stopped living, but having her is the reason I get up every morning.

If love could have saved her, I’m sure she would have lived forever.”

Sincere thanks to Tracey for sharing her story with us. 

Image via Unsplash.com 

Read more: Life after loss: How one mother learned how to let go

Read more: Why there is no template for dealing with grief