Nurse Cassidy-Loren Andrews, 27, was warned one kiss could kill her baby. Here, the mum tells of her pain as the tot was placed an incubator “bubble”…
"My baby Arriella was born on January 7 weighing 7lb 5oz, and she was so perfect I couldn’t have been happier.
Life really was blissful.
But things changed dramatically at two months when Arriella developed a cough that the doctors thought was croup.
It lasted weeks. Then one evening I saw she was sucking in her stomach so much with every breath that I could see all her ribs.
I called the NHS helpline because I didn’t want to overreact but the call handler instantly sent an ambulance to rush us to King’s Mill Hospital, near our home in Mansfield, Nottinghamshire.
I felt so guilty that I hadn’t called 999.
At first they suspected Arriella had a respiratory infection and put her on antibiotics. She started to get better but that relief was quickly snatched away when she developed pneumonia.
Next it was the bacterial bug haemophilus.
Over the next three weeks my brave tot would get a bit better then she would get so poorly again. I thought I was going to lose her.
Doctors were trying to treat her for all these different things but when they realised there was thrush all down her windpipe, they knew there must be something more going on.
We were sent to the Queen’s Medical Centre in Nottingham for more specialised blood tests and in just six hours they had the results. The specialist told me Arriella had no immune system. I couldn’t speak. I couldn’t get my head around what was happening.
I remember asking if she was going to die. The specialist said it was serious and it’s called severe combined immunodeficiency.
All I could think about was this film I’d seen called Bubble Boy with Jake Gyllenhaal. I asked her if it was like that and she said yes.
When I watched that film I thought it was a made-up condition.
I never realised that the real Bubble Boy was an American lad called David Vetter, who spent his life in sterile chambers because exposure to the world would kill him. He died aged just 12.
Now suddenly it was happening to my little girl. I was being told that every time I went to see Arriella I’d need to wear a gown, gloves and a mask. Just a kiss from Mum could kill my little girl.
This went on for eight days and it was so difficult. Knowing that trying to comfort her could potentially take Arriella’s life was absolutely horrendous.
Eventually she got a bed at London’s Great Ormond Street Hospital.
She had to be moved in a sealed shuttle like a toboggan so she didn’t pick up any germs.
Since then my girl has spent two-and-a-half months in a sealed, sterile and air-filtered room where we can have contact.
I call her my girl in a glasshouse because the window in her room is the closest she has come to seeing sunshine.
There were so many things I’d planned to do while on maternity leave but instead we’ve been torn away from our home and our family.
And we’ll be here until Arriella can get a bone marrow transplant. It is her only hope of developing an immune system and being able to play in the sun like every child should.
Seeing Arriella like this has been heartbreaking. She is surrounded by wires and tubes. It’s so isolating.
There have been so many days when I’ve felt completely helpless.
One day I just sat by her bedside thinking ‘there is nothing I can do to help you’. It was awful.
The help and care we have had each step of the way has been amazing.
And I am so proud of Arriella. She is so bubbly and she keeps on smiling despite everything she has been through.
At first it felt like she was going to be taken from me. But now I’m more positive.
If Arriella can keep smiling then I have to. I need to have hope and to fight for her because she can’t do it for herself."
- Cassidy-Loren is on extended leave to be with Arrellia. You can support them here .
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