Baby Bella VOGM Journey
Donation protected
Last Monday 4/22/2024 my niece found out news no mother-to-be wants to hear. Emori went to the hospital due to having contractions and only being 34 weeks, they did a sonogram just to check things out and found something alarming in baby Bella’s brain. After further investigation it was determined to be a rare condition called Vein of Galen Malformation or VOGM. This rare condition causes heart failure and/or hydrocephalus (fluid buildup in the brain) in babies before they are even born. VOGM newborns are usually fed intravenously because eating could cause undue stress on the heart. VOGMs often require treatment in the form of medication or brain embolization before the child's first birthday. VOGM is so rare the only specialists are located in Boston and NYC. Since the diagnosis there have been a number of appointments here in Georgia where we live, fetal echocardiogram and an MRI to determine the severity. 4/26/2024 after the fetal echocardiogram it was determined Baby Bella’s heart is enlarged. With Emori being 17 she has had to have the help of her mom, Angela to help navigate the next steps. Angela has found a support that has offered tons of information and encouraging stories of other babies success stories and treatment. Emori has had to stop working her job at a nursing home due to doctors orders and unfortunately Angela has been unable to work due to the need to be with Emori at appointments and get a plan together. Emori will have to deliver via c-section in Boston so the specialists can immediately evaluate Baby Bella and treat accordingly. The time they will spend in Boston is uncertain right now and differs from baby to baby but they have been told from 10 days to 6 months. During the time Angela will still be unable to work. While Emori’s dad, Lathan has his own business and is working as mush as he can the financial strain will be unimaginable during this time. While they are in Boston housing is covered but they will have the cost of food, supplies for daily living, Uber to and from the hospital, and the bills will keep piling up back at home. If you could please find it in your heart to donate whatever you can to help Baby Bella get the best care she can get and take as much stress off of Bella’s parents Emori and KJ and Emori’s parents while she’s there.
Organizer
Ashley Rayner
Organizer
Griffin, GA