Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Ivy

Ivy Amelia Mitchell

Dorne and Lee MitchellIn 2011 we found out we were expecting our second baby, we were over the moon. At 35 weeks pregnant we were given some terrible news, our perfect little girl appeared to have abnormalities! An amnio. confirmed she had DiGeorge Syndrome, along with that came a rare and complex cardiac problem which will see her require open heart surgery throughout her life.

3 weeks later I was induced and we welcomed the most beautiful and perfect looking baby into the world on 6th August 2012. We, along with the doctors were amazed at how she seemed to cope considering her internal abnormalities and we took her home 12 days later. Little did we know what was to come and at 12 weeks old Ivy caught a cold but to a child like Ivy who is immunosuppressed it knocked her for six.

On November 4th 2012, Ivy was suddenly admitted to hospital, she was intubated on life-support and we were told to expect the worst on several occasions. On 24th July 2013 after 9 months on intensive care Ivy eventually came home. We were always determined she would be home for her 1st birthday, that was our focus and we never gave up on her.

This is a brief insight into Ivy's incredible story so far. Ivy failed to come off ventilation and after many weeks of emotional highs and lows, we were told the bronchomalacia she had was so severe, her pulmonary arteries were compressing her airways. Ivy was extremely sick and also in severe heart failure, our beautiful baby had become unrecognizable and she was transferred to Glenfield.

On 27th December she underwent open heart surgery, this was the longest day of our lives and 9 hours later we got the call she was successfully out of theatre. A few weeks later she underwent more investigations as despite several attempts she was still unable to breathe alone. The damage her heart had caused to her airways meant she needed long term ventilation, she needed a tracheostomy. Hopefully this would stop the episodes of her going blue almost black as she was revived daily, she was completely paralyzed so doctors could successfully bag her!

Ivy Mitchell 1So 3 surgeries later, a repair to her diaphragm, her trachy and a gastrostomy brings us up to date. Ivy has continued to amaze the doctors with her strength and determination to survive. Her battle is far from over, we don't know what the future will hold, nor do we want to think about it, but some days I can't help myself and I cry.

Ivy we pray will grow old, sadly she may not, all that is certain is there isn't a more loved little girl. We feel truly blessed to have such an inspirational fighter to call ours. Ivy changed our lives, she changed us as people, she made us better people, more tolerant, she puts things into perspective. Ivy won't be defined by her 22q but through her amazing personality, she touches every single person she meets.

The months in hospital saw stress levels go through the roof, the constant daily 3 hour plus commute, trying to maintain some normality for our eldest daughter, trying not to drown in worry, fear and guilt was almost too much to bare. As I sit here writing this, so many painful memories come flooding back, living out of intensive care for 9 months where Ivy remained until she was discharged is not normal, it's not even comprehensible! Many parents lost their babies, we were subjected daily to things no parent should encounter.


Ivy Mitchell 2However, thankfully, we are delighted to say Ivy is now making remarkable progress, she is spending time off of the ventilator, has taken her first steps, and has remained in good health despite her immunity issues. Her one kidney is functioning well and we are on annual check-ups for that. Her cardiologist keeps a close eye on her heart and we just have to watch and wait for the next step.

Ivy now has a baby sister too, and we look forward to hopefully seeing Ivy be rid of the trachy in the future and to be a normal family, to go swimming, to the beach, no intrusion of carers of a night time to watch Ivy sleep, no alarms bleeping, no oxygen cylinders, no sideway glances when she needs suction in public and the list goes on.....



Ivy Mitchell and sistersIvy is the most adorable, cheeky, spirited little girl, and it's her grit and determination that sees her still with us today, along with some of the best doctors and surgeons we could ask for. Our next focus is to hear those first words she will utter one day, and I don't think there will be a dry eye in the house when she does, and we know she will....

Ivy Mitchell 3


Long may Ivy continue to amaze and progress we are so very proud.


Written by Dorne, Ivy's Mum.