Mia's story is heartfelt and often we as parents with children with disabilities and chronic illness are living on the edge with their limited life span. These kind of stories are a reminder that life is short and that they should not be forgotten. R.I.P Beautiful Angel Mia. - Tanya Dennis.
My story started in March 2002, just over 10 years ago, when my beautiful little girl Mia was born. A textbook pregnancy, the birth went without a hiccup. I was taken to my room while Mia went for her shots.
However, it was not long after that I was taken to another room and isolated from the other mums. I was informed that Mia was doing funny things with her eyes and failing to thrive. Mia's heart was not working correctly and within the hour we would be air lifted to another hospital. The hospital staff thought it best to have a photo taken with her right away, as they were unsure she would survive the trip.
Thank god though, she made it there safe. The doctors diagnosed her with Tetralogy of Fallot; a congenital heart defect. Encouragingly, we were told that a simple operation would fix her and we could be home in 2 weeks. However, the real nightmare was only days away.
After a week of tests, the doctors booked an appointment with us and social workers to reveal that Mia had important genetic information missing from chromosome number 1. Her syndrome was so rare, that they didn’t even have a name for it. It was referred to as 1P36 (One P Three Six) deletion syndrome and that the diagnosis for our little baby was that she would never hold a cup, walk or talk. With her heart the way it was, she was probably unlikely to survive the next 2 months. They strongly urged us to think hard about the decision to give her the operation she needed for her heart as quality of life would never be that of a normal child.
We spent a further 3 months in the Sydney hospital and Mia started having her first seizures. I tried to hide my fear of something else being wrong. Our medication journey also began. A procession of drugs such as phenobarbital, sabril, lamictal, frizium and epilim. Mia was having about 50 myclonic spasms and 30 tonic clonic seizures a day. This resulted in a lack of development and ongoing fear that her heart would not cope.
By this stage we had come to the decision that we would not give her the heart surgery but instead allow her to live out her life, comfortable, loved and happy. We still had no idea what that would really entail.
There were many more hospital stays to come. On two occasions at home I revived Mia from cardiac arrest. At a loss, I would walk my hallway at night crying and wondering if Mia ever smile at me and how I could stop this pain for her.