Savannah’s Healing Journey

Hello everyone! 

 My name is Heidi, I am the mother of Savannah. She is a beautiful smart 5 year old girl who loves playing with friends, Barbie’s and just has a great love for life! She is the sweetest blessing. We are from youngsville la.  I created this go fund me account to try to get some help with Savannah’s medical costs and in hopes to one day be able to travel to the amazing Boston Childrens Hospital where there are a team of doctors that specialize in children with her condition and are well known to be the best in the country so she can finally get the care that she so desperately deserves and needs in order to greatly improve her quality of life. Her condition is so rare that most doctors here are not very familiar with it. EA/TEF occurs only in about 1 in 2,500 live births. So here’s a little bit about her story; at birth, Savannah was diagnosed with EA/TEF (esophageal atresia with tracheal esophageal fistula), meaning that her esophagus wasn’t fully formed and didn’t connect to the lower half of her esophagus, and instead, the lower half of her esophagus was attatched to her trachea;(the tube that attaches to the lungs). Kids that are born with this usually have lifelong health issues and most commonly suffer from pneumonia/aspiration/tracheomalacia, frequent respiratory infections and Illnesses, and reflux due to their special anatomy and the scar tissues and damage brought on by surgery as well as other genetic disorders that they can be born with when having EA/TEF. She had to have emergency surgery just hours after birth to repair her esophagus and trachea and put everything where it needs to be. Immediately following, She was in the NICU where she was sedated, on a ventilator, and had a pic line going to her major heart valve to receive medication, and had a hemovac drain tube placed inside her surgical site that drained blood and fluid into a bag outside her body. She wasn’t able to eat for the first 8 days of her life while her little body being healed, so she was placed on iv nutrition. She came home after 2 weeks in the NICU. As she got to become a toddler, she started to have a lot of hospitalizations do to respiratory infections like RSV and pneumonia. She has been suffering with significant recurrent pneumonias which are easily brought on even from a common cold virus and has had countless pneumonia infections in her 5 years of life. We are, and have been searching for answers for so long to figure out exactly what’s causing it and how to fix it. She has had 4 pneumonia infections just this year alone which is leaving her lungs scarred every single time. She sometimes has a hard time eating due to having a hard time getting the food down , and her doctors think she may be aspirating as well which may be contributing to pneumonia. I’m waiting for her team of specialists to all evaluate her here in Lafayette. She most likely will need an endoscopy of her esophagus, and a biopsy to check for acid levels, a laryngoscopy to check for a laryngeal cleft and throat and vocal cords. She will also need a bronchoscope to look at her lungs and airway passages and most likely some type of surgery. Since her condition is so very rare, we would love if our girl could be blessed with being able to go to the best hospital in the world for her condition being that’s what they specialize in and know exactly what to look for and come up with a customized treatment plan for her. She recently had to quit going to her school due to frequent illness and her most recent hospitalization where she was treated for staph pneumonia and middle lobe syndrome, so she is now approved for home bound. We would be so very humbled and thankful for anyone who would want to donate towards helping her so that she can get the best care, quality of life, and a chance to thrive and not have to miss out on anything ever again in fear of getting so sick. We don’t have all the answers yet, but we are praying and fighting for them and her while Jesus guides us along this journey and path to recovery prayers are much appreciated thank u!!