Ellie and Renae's Story

At just 19 years old, I found out I was pregnant. I was over the moon, but just a little terrified. When my 20-week scan came around, my baby decided to hide her head, struggling to take measurements.

COVID made everything harder, and alone, a week later, I headed back for another scan. It was then my pregnancy journey changed; but no matter the outcome, I would love my baby.

The doctor told me Renae’s jaw was extremely small, her head was shaped more like a baseball and her kidneys were bright and enlarged. By 25 weeks pregnant, I was brought into a room and told my baby had a life limiting condition and might not survive.

Faced with unimaginable decisions, no family around, unable to get a hug from anyone, I was given a box of tissues and told to take all the time I needed.

At just 31 weeks, I went to our local hospital because of reduced movement. A scary moment for any expecting parent. I soon found out this would be the day Renae was born. Due to complications, I was rushed to Leicester Royal Infirmary and met with multiple steroid injections and magnesium sulphate to help her brain.

The ultrasound showed Renae was practicing breathing – I couldn’t believe it, she was already proving everyone wrong. I was so proud of her. The doctors spoke in jargon I didn’t fully understand, but my blood flow to the placenta was worsening and I was losing fluid. Renae needed to be born via emergency C-section immediately.

No cry and the screen wasn’t dropped – sixteen long minutes passed. The nurse came over, took a photo, and told me Renae was alive but needed breathing support. She was tiny, with a full head of hair, weighing only 880 grams. The doctors were working hard to stabilise her.

I had to wait five long hours before I could see her in the neonatal intensive care unit. I didn’t get to hold her for 36 hours as she was on a ventilator, just held her tiny hand through the incubator. It was later confirmed that Renae has Cornelia de Lange Syndrome (CdLS) that affects 1 in 10,000 to 30,000 children. This limits her vision, hearing, heart function and feeding, to name a few.

My world came crashing down. I had to grieve the child I thought I was going to have. Another Mum sent me the poem ‘Welcome to Holland’ –

“But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

(Extract taken from Welcome to Holland by Emily Perl Kingsley).

In 2022, Renae was referred to Zoe’s Place by our community children’s nurse. As a single Mum suffering with mental health, life became overwhelming. We couldn’t access resources like others, and as a parent of a disabled child, you lose your identity and sense of purpose.

Zoe’s Place sounded like a dream and truly lived up to it. A hug when we needed it most. Renae experiences comfort and care, and I get support, solace and sense of community. It’s the little things that make Zoe’s Place so special. Renae loves the sensory rooms, making friends, and the gardens. Zoe’s do much more than what people might think.

I found my strength and they give us both beautiful memories. Memories to last a lifetime. I’m so grateful for the incredible team who pour their hearts and souls into supporting families like ours.

Renae lives life to the fullest. She is a happy, cheeky little character, and her smile lights up the world.