Rebekah's Story

09 Aug 2021

  

My pregnancy with Sophie Rose started off just like with her older brother, with terrible morning (all day) sickness, but we had no idea anything was wrong until our 13 week NT Scan.

My husband was working that day, so my sister who was visiting from overseas, came with me. We were both so excited. The sonographer was so quiet through the whole scan, only answering questions when we asked what we were looking at. She left the room for a very long time and came back with such a sad look on her face. I will never forget the drive home, trying to get in contact with my husband to explain news I didn’t understand myself. Our baby appeared to only have 1 kidney, the bladder wasn’t visible, we had extremely low amniotic fluid and what appeared to be cysts in the abdomen area.

Three weeks later we were at the maternal fetal medicine clinic having more scans done. The doctors said our baby looked like it had cysts in the bowl and abdomen, one kidney and they did see the bladder this time. They said the cysts in the bowel could be a sign of cystic fibrosis (a condition of the lungs). So, I had the blood test to see if I carried the gene. It was a long 2 week wait – but finally at 18 weeks I had a phone call to say I wasn’t a carrier! This meant our bub didn’t have cystic fibrosis. I was so happy I cried, and the lady on the phone was so happy for us too. Little did I know what was to come.

At our 20-week morphology scan, our doctor quite bluntly told us that we needed to talk. Our baby had significant problems and we were faced with two options that no parent would want to contemplate – to terminate, or to carry the baby to term knowing she may not survive after birth.

We chose to continue with the pregnancy and pray for a miracle.

At 30weeks + 5 days, May 16th 2019 (My older sister's birthday) I went into premature labour and our beautiful baby girl, Sophie, was born. She lived for 13 hours until we had to make the heartbreaking choice to remove her life support. We got to see her briefly open her eyes and move her hands and feet before she passed away in my arms while I sang to her.

Although Sophie didn’t survive as we had prayed she would, we did get our miracle, and that was the time we got to spend with her. We didn’t know it at the time, but we later learned that Sophie had been much sicker than we had even anticipated. It was a miracle she was born alive at all, let alone that she would hold on for 13 hours to be with us.

Due to Oligohydramnios (low amniotic fluid level), Sophie suffered from pulmonary hypoplasia (underdeveloped lungs). Some of her issues could have been operated on and corrected, however with her lungs, she would have died under anaesthesia.

We didn’t have a funeral for Sophie. Instead, we put all our energy into planning a ceremony to acknowledge her due date. Our closest family and friends gathered at our home where we had a butterfly release in honour of our darling girl.

I was in a very bad mindset, but Red Nose supported me and put me in contact with an amazing counsellor who helped me through some of the tough situations I faced after Sophie died. Before I needed to use these services, I had no idea about everything Red Nose did.

I want to make sure every bereaved parent knows that help is available if they need it, that’s why Red Nose Day is so important to me. It’s an opportunity to normalise talking about our angel babies, which is important because pregnancy and infant loss is still taboo.

Because of this, it’s extremely isolating. When you walk into a room, people stop and stare at you and don’t know what to say. I hope that by sharing our story it will help to educate others in how to handle those situations better.

I miss Sophie so much and my arms still ache to hold her again.

I had a special ring made with Sophie's ashes inside it. I like to wear it on special occasions so a part of her is with us. At Christmas last year my sister got a candle with the letter S on it and lit it on the table in front of us. On her birthday this year we got together with some friends and family to put together memory boxes to donate to local hospitals. I also had a little monarch butterfly needle felted that I include in family photos to represent Sophie, as this is the butterfly we released on her due date ceremony.

Together with my partner Rob, Sophie’s older brother Jacob and younger brother Jeremy (our rainbow baby) we will be remembering her this Red Nose Day and every day.

I have an Instagra page dedicated to sharing Sophie's life and story you can follow here.

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