Today I write not because I want sympathy but because I want a listening ear. Life in the last two years has been very difficult a journey one could say. I never in a million years thought I would face losing a child. Everyday I ask my children how they are feeling, check on there breathing. You could say I have turned into a paranoid mom. When you face a trial like we have it makes you feel that at anytime something just as bad if not worse could happen.
Before Ella passed away I was content with life. I never thought anything could ever happen to my cute little family. We were perfect. Doctors would tell me before Ella was born that she would never be able to accomplish anything. I told myself from day one that she would show everyone that she could do everything. I pushed her and today as I sit here I think to myself maybe I was too on her to do things. When Ella passed away she could do everything we were told she wouldn't do. What a miracle she was. She taught our family so much. Her strength, her determination and her love for all that knew her.
When Ella passed away I scrambled for answers. I knew and still know till today that Dandy Walker alone couldnt have taken her. But the examiner that did Ella's autopsy said that it was Dandy Walker alone and nothing else could have taken her from us. Determined to find answers both Matt and I kept searching. I came across a post from the ceo of Dandy Walker Alliance. They had money donated to a research doctor at the Seattle Washington Children's Hospital. At first I was very nervous to contact him because I felt that it was just for children that were here on earth. But the more I talked to him I found that he was willing to help our family search for answers. I sent him Ella's autopsy and a few CT scans of her brain. We are still researching but he is pretty sure that the fluid in the back of her brain in her DW cyst filled up hitting her brain stem and that is what took her from us. Which raises concerns. I always trusted Ella's doctors, I put a lot of faith in them to take care of her. But this information actually tells me that her neurosurgeon that we trusted her life with dropped the ball. In November 2012 Ella was 4 months old. She went into emergency surgery having her first shunt placed on top of her head to drain the fluid in her ventricles. The next day we handed over Ella as they took her back to surgery to place another shunt in the back of her brain for the fluid in her cyst. Twenty minutes or so had passed and they brought her back to her room. The neurosurgeon mentioned to us that he had decided that she didnt need a shunt in the back that he felt the top shunt for the Hydrocephalus was clearing the fluid from the back too. Little did us parents know that the top shunt had nothing to do with the cyst fluid in the back and it actually wasnt helping at all. I feel like a fool. I trusted him to take care of our daughter and he failed us.
We know that information we receive now doesn't mean that Ella would still be alive today. She could have still passed away. But it does tell us that in the future to never trust just one doctor with our children's lives. To get second and even third opinions. Life is too precious to just trust one person you have never known to make things better. I imagine if Ella was still here, playing with her brothers and older sister. She would be so proud of all of them. I look at all of our children and I can see a little bit of Ella in each of them. She sure left her mark.
I will continue to do research and find answers. I will continue to fight for Ella..... I love you my sweet princess.
