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Evie-Anne's Story
The beginning ~ Diagnoses
Evie-Anne was born at Heartlands hospital on 10th November 2009 by emergency Cesarean c-section due to foetal distress and meconium in the amniotic fluid.
Evie-Anne was born with meconium aspiration syndrome, she had breathing difficulty's, a lung and chest infection. Evie-Anne needed intravenous antibiotics and was tube fed in an incubator helping her to breath for 11 days, she was then given a full checkup and discharged completely healthy (we also found 2 front teeth!!!).
Evie-Anne took soooo long to drink her milk, over 1 hour to drink 30-90 mils, and unlike my other children as weeks went on she drank less and less. As months passed we noticed Evie-Anne not gaining any weight and not hitting those all important milestones, she didn't smile, have any kind of eye contact with us, she couldn't even hold up her own head, at 3 months old she was still as floppy as a newborn baby, and she did not fixate, follow any objects or look at us, I myself as a mother of 4 other healthy children, knew something was wrong, but, I was never prepared for the upcoming months.....
As health visitors expressed there concerns, Evie-Anne was referred to Heartlands hospital for "failing to thrive" by her GP, she failed all sections of her 6 week check-up, and her GP expressed to me he felt Evie-Anne had some kind of congenital problems, possibly cerebral palsy, I was of course worried and devastated.
On 5th February 2010 we went to heartlands hospital to see a consultant pediatrician, she expressed her deepest concerns about Evie-Anne, she referred her to a dietitian who prescribed her a high calorie specialised milk, physiotherapy, and for an MRI scan, to see a paediatrics eye specialist, several blood tests and referred to a paediatrics development specialist. We were told to expect a long medical journey, and that an underlying diagnoses may never be found, and in her first specialist report she diagnosed Evie-Anne with:

  • Uncontrollable Epilepsy.
  • Optic Atrophy (severely visually impaired).
  • Global Development Delay.
  • Seborrheic Dermatitis (inflammatory skin condition).
  • Generalised Axial Hypotonia (very low muscle tone).
  • Dysmorphic Feature's.
  • Diesese Related Malnutrition.
  • Plagiocephally.
  • NG Tube Fed
  • Hypotonia
Taking all of the Dr's input in, trying to understand why is this happening to our beautiful little girl we did not realise things were about to get a whole lot worse.
The following day after a day out shopping Evie-Anne fell asleep in my arms after a feed, I was sat on the sofa chatting to my good friend when all of a sudden Evie-Anne's eyes opened wide and rolled upwards, her legs and arms began to jerk and her whole body began to jerk violently, I am unsure how I did not scream, and the 3 minute's it lasted for seemed to have lasted forever, we took her straight to hospital where she was observed overnight and discharged the very next day. We were told this may have been a "one off" seizure, but with Evie-Anne's other medical problems is as very likely that that Evie-Anne has epilepsy, and to expect many more seizures.
Since that first seizure Evie-Anne has continued to have 1-3 grandmal seizure's a day, and anything from 20+ absence seizures each day, even with several epileptic medications it is very rare Evie-Anne has a seizure free day.
Evie-Anne is seen by many many specialist, and is currently diagnosed with many medical problem's, and after 7 month's of extensive investigations and testing Evie-Anne was finally diagnosed with Monosomy 1p36 Deletion Syndrome by a Genetetic specialist.
As years have passed Evie-Anne has been diagnosed with many other medical conditions, and in true princess style she has tackled everyone with a huge smile on her face.
Martina McBride.
In my daughter's eye's.
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