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My Story...

Amelia...

Hi, my name is Jo and I am Amelia's mummy. 

Amelia is our only child. At our twenty week scan we were told our baby's heart was not formed correctly, we went for tests and scans, and it confirmed that our baby girl had cardiac tetralogy of fallot (a congenital heart defect) and Digeorge Syndrome. When Amelia was born she was put straight onto medicine for her heart. Later that day the doctors noticed she had holes in her eyes and we were then transferred straight to Birmingham Children Hospital. At 2 days old Amelia had an operation to save her eyes and at 6 days old she had corneal grafts

After this it should have been an easy wean off the ventilator, but Amelia wasn't letting go of it that easily! We spent a further 5 months on paediatric Intensive care Unit having lots of tests and operations which is when Amelia was diagnosed with Polymicrogyria and Tracheobronchomalacia. It was at this point we had to decide, along with the doctors, if we should carry on with providing care or not. 

Amelia had another 4 month stay at hospital due to cardiac failure. After 2 open heart surgeries and a cardiac catheter in just 2 months, Amelia was given one last chance of surgery with her 3rd open heart operation which thankfully worked! She certainly had all the surgeons baffled as to what she was doing! The doctors always say that Amelia has her own medical book, because she never seems to follow their one!

Zoë's Place Baby Hospice had been mentioned to us many times but i didn't feel I could leave my little girl. Amelia ended up on oxygen after bronchiolitis and we found out her corneal grafts had failed, therefore she was registered blind. I started to think that maybe Zoë's Place could offer us some respite and give Amelia a chance to socialise and engage in different activities. 

Children with Digeorge Syndrome struggle to socialise so I felt it was important for her to have the opportunity to do this. Amelia loves the animal therapy sessions, espeically cuddling the rabbit! She has been to the park, to watch 'The Tiger Who Came To Tea' and to the circus, all great trips provided by Zoë's Place for which we are thankful. Amelia also loves her music and is always provided with a tambourine, the music bar or even music therapy when available. This is so valuable for a child that has no sight. 

Zoë's Place offers us a chance to recharge our batteries so we can be better parents for Amelia. We understand not how impotant it is for us to have a break even though I miss Amelia, but it makes it easier knowing she is having so much fun. 

 

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