CDH and Hope for Vaeda

Baby Vaeda was born may 7, 2026. She came one month before her due date. We found out at 19 weeks that she had a congenital diaphragmatic hernia or CDH and fetal growth restriction. The hernia on her left side allowed her liver to grow into where her lungs were developing and displaced her heart. This meant her lungs could not develop properly. We did genetic testing and found out she had MYH10 which is incredibly rare. There are barely any studies available on it. What connects her genetic varient is these babies develop CDH as well as fetal growth restriction. She was given less than a 30% chance to survive if she was born still born. She fights every single day to breathe and has good days and bad days. She is so medically fragile that they hope she can get out of the hospital by December but, sometimes these babies take a turn for the worse and never make it out. Other times they stay up to a year. When I was pregant with her I developed hyperemesis gravarium and lost my job because I just couldn't work in a surgical field. I lost my car, I fell behind on rent. My husband went to away for a bit and I was left destitute. What would really help or family is finacial help and hopefully enough to get a car. I use food banks and I have applied for snap but, the process keeps changing. I also have a two year old who I do have help with right now, but it's only temporary. This whole situation is overwhelming and stressful. Eventually though, I would like to start a charity to help other parents in my position. This is the hardest thing I have gone through in my life and if I can make it through this, I will devote myself to the help I received and ensure no one has to struggle like this.