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My perfect baby

I work for Brandon as a support worker and I'd like to share my personal story with you.

Joanna and baby Elsie SkyMy beautiful daughter, Elsie Sky, was born on 9 October. She is perfect. My pregnancy was an emotional rollercoaster which began for me when I received a screening result of a 1 in 20 chance that Elsie may have Down's syndrome.

When I had the blood test, I was told that I would receive a letter through the post if I was low risk, and a phone call if I was high risk. I received the phone call the next morning. They told me there was still a 95% chance that my baby might not have Down's syndrome, and then asked if I still wanted to continue my pregnancy. My mind was racing, and I couldn't answer that question, so they said they’d call me back in a couple of days.

I phoned my manager at work. She was so supportive and encouraging and I said to her, as I was sat outside work, that because I am so passionate about my job, and the people I support, I knew I could do this.

At my 20-week scan, after reading about soft markers, I asked if they could see the nasal bone. Everything else appeared to be fine but after several attempts I was told that they couldn't see it and so I would be referred to foetal medicine. At my foetal medicine scan they picked up on the missing nasal bone, a shorter than average femur, and a blockage in Elsie's tummy. All soft markers. I sobbed. I cried because I didn't know how I would cope with a baby with additional needs and grieved for the life that she could have had.

To prepare myself emotionally, I decided to pay for the Harmony blood test. I had the test and received the result that Elsie was positive for Down's syndrome a week later. The lady that delivered the news said: "I'm so sorry sweetheart." I found myself reassuring her that she didn’t need to apologise for my baby which I had no intention of terminating. I was anxious and fearful of the road ahead, but through my pregnancy, received so much love and support, and connected with some amazing people that gave me so much inner strength.

Elsie was born by caesarean at 35 weeks and 3 days. She was taken away from me minutes after birth because she needed to be put on a drip, in preparation for her tummy operation. Because of this, my bonding with her wasn’t instant. She was being looked after in the neonatal intensive care unit (NICU), by the most amazing team and a few days later, when I was sat by her incubator, I felt a whoosh of love.

Brandon trainee Dan has a cuddle with baby Elsie SkyElsie stayed in NICU for 5 weeks and is now home. She's the most chilled baby and we are besotted with her. All the anxiety that I felt during my pregnancy has been replaced by the joy that is Elsie Sky. She's proving a big hit with everyone she meets, including the people I support at work.

I can't thank my team at Brandon Trust enough for their ongoing support and for giving me the passion and strength that has empowered me to provide Elsie with a life full of opportunities and to be happy and free.

More information

If you want to find out more, the Down's Syndrome Association offers lots of helpful information, support, and advice. I also highly recommend watching the inspiring Ted Talk, Overcoming the Fear of Down's Syndrome, which gave me so much strength.

Joanna White
Support Worker