Tracey and Grace’s Story

My name is Tracey. I was 22 weeks pregnant when we found out Grace was terminally ill. She had, after many examinations by professors of fetal medicine, Thanatophoric Dysplasia. This condition meant her long bones were measuring short – at 23 weeks Grace’s were measuring 12 weeks – and the fatal part of this condition causes the chest cavity to not grow enough for her heart and lungs. 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’m sorry if this upsets anyone reading but unfortunately you cannot pretty up this condition.

I couldn’t bear this to happen to my baby. My dad died two years previous 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 as 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 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 knowing the baby in the bump they were admiring was not going to be in the pram I had my eye on, or sleeping in her brother’s Moses basket. Having spent 4 weeks nodding along to people’s excited questions I was slowly losing my mind.

Travel

Due to the fact I couldn’t be induced at home with my family around me, I had to go somewhere where they understand what me and my baby were going through. We travelled to Liverpool on Paddy’s weekend amongst hen parties and revellers. We arrived to 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 to check Grace, that they may have made a mistake in the two hospitals we were in in Ireland; we might get good news, her chest may be growing, allowing 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 having an early inducement was 100% the right thing to do for my tiny baby at that moment.

Labour

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 and felt content 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 that I had brought was far too big. She was wrapped in a teddy her sister gave her and a teddy Grace gave me.

Goodbyes

At 5pm 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, gave our last cuddles and kisses to her, 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. How cruel it is that we had to do this, it actually leaves me speechless.

We arranged Grace’s funeral from the prayers right to the music I wanted played. It took place in a church in Liverpool by the priest who blessed her and was attended by a midwife. We couldn’t go because we simply couldn’t afford to. I had to wait 3 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. Again I say I find it hard to believe this is something parents have to go through. Did I actually have to sign for my daughter’s ashes like an order from ASOS?

Next Few Months

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 every night – I actually brought her teddy away to a hotel and it was taken to the laundry with the bed sheets. I was getting into bed at home when I noticed he was gone. Thankfully the hotel found him in the laundry and posted him home from Athy!

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 my son almost a year after she passed. She gave me love 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 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. 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 you, you would have lived forever xxx

Pink Teddy Bear

Artist: Loo Hicks

Audio: Rita Evelyn Smyth

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