****** UPDATE - 4/1/2016 ******
This is a complete update on the whole story from Bella's mum, Naomi. Very touching!
Ezabella's respiratory doctor saw her on monday the 21st of December and she was healthy a little off her food but her chest was clear. Monday night she had started vomiting, we already had a morning peadiatrician appointment tuesday, we took her to that and she wanted her to be admitted, We went up to the ward and she continued to deteriorate, when I left at 10pm to take he other children home she was clearly very ill, she had been put on wall oxygen. She was very lethargic but she was doing ok, she was cuddling Daddy when I left. At around midnight tuesday they decided to transfer her, the transefer team arrived at 2.30 wednesday morning and intubated her for transport, they were going to take her to Royal Children for potential heart and lung bypass because they weren't sure how long she could keep fighting.
They intubated her at 2.50am but her O2 continued to decrease until her heart stopped, they preformed cpr for 25mins before heart started and then transferred her to Royal Children's, when she arrived their biggest concern was now her brain having been oxygen deprived for such a long period, they cooled her for 72 hours, during this time they tried to keep her as stable as possible but she was still having significant desats with 100% oxygen on the ventilator, On the 24th they preformed a bronchial scope and discovered she had a blind ending tracheal pouch from her TOF surgery which may or may not have contributed to her oxygenation issues during the original intubation.
On the 26th they did a scan (i can't remember what it was called) it showed her brain had swelled to the point of no circulation, she was brain dead.
On the 27th of December she had surgery to donate her heart.
We don't really know what happened, as of the 26th none of the test they had done had come back positive and they were testing for other thing but I don't have those results.
The Coroner Court preformed an autopsy and it can take up 20 weeks for the official report.
Ezabella successfully donated her heart last night, giving a child the precious gift of life! Unfortunately she was too sick though and the damage was extensive to her lungs and liver, and her kidneys were too small.
Ezabellas parents spent their first night at home in almost a week last night, and that was extremely tough for them. Ezabella is now with the Coroner, determining the reason for her sudden deterioration. The funeral has now started being arranged. The money raised from this will hopefully pay for the lovely send off the beautiful Ezabella deserves, along with a new pram for the parents as the only have a double pram which is now inappropriate and obviously extremely hard to deal with, using only one side now :-(
The money will also help them have the time to grieve before having to return to work to support themselves and their other 2 children, Joshua 10, and Alexis 4 months. Whatever is left over from there they are going to donate Chromosome 6 research.
Please continue reading below for the story from the parents as to what happened during the week.
It's boxing day today and I find myself in the impossible situation of having to say goodbye to my daughter for the last time.
This is for anyone who cares to read. My daughter Ezabella got sick on Monday night, we still don't know why or what she had. She deteriated quickly over the course of Tuesday, to the point where they felt they needed to intubate her because she was losing the energy to keep breathing. After intubation she was to be transferred to a larger hospital. For reasons we are still not sure about, she vomited while under sedation and her heart stopped. They worked on her for 25 minutes and managed to get her heart restarted, but that long without oxygen is a long time.
They completed the transfer, and kept her body cooled to help reduce the swelling in her brain caused by lack of oxygen for so long. Today, 72 hours after her initial incident, they ran a test to check to see if she still has any brain activity.
She doesn't. She is for all intents and purposes dead. But because of the life support, her heart keeps beating, and she is still breathing. I have to say goodbye to my daughter while she is in this state.
Ezabella is 1 year, 6 months and 26 days old.
I feel like you should all know that for a period of time that was much too short my daughter existed and she was beautiful.
Thank you for taking the time to read this.
- Nick (Ezabellas father)