Ralleigh’s Road To Recovery
Hello our names are Caleb and Mary baby girl Ralleigh Jane Brown she was born on May 3rd, 2021.
Ralleigh has been diagnosed with 8 defects. To sum up what is the cause of the defects she was diagnosed with VACTERL SYNDROME. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. To be diagnosed with this syndrome people typically have at least 3 of the characteristic features listed above.
To start Ralleigh has Tetralogy of Fallot. This is aheart defect. Ralleigh has a hole in the membrane between the 2 lower chambers in her heart. Her pulmonary (lung) artery is also narrowed. This gives her less oxygen to her blood and could also cause her skin to look blue. This also can affect her later in life. These require her to have surgery but will be able to have surgery till she is at least 3-4 months. We knew of this while she was in the womb but doctors were unsure of how bad it would be until she was born.
One of the defects we didn’t know about till she was born was that she has a Cleft Palate. Her cleft palate is a hole in the back of the roof of her mouth. Due to this she will have trouble nursing.Right now she has a feeding tube going through her umbilical cord because she can’t be fed through her mouth. This will also require surgery butnot until she’s at least 12 months. We will be having to use special bottles until she can get surgery.
While she was in the womb she had a Single Umbilical Artery. An umbilical chord typically has 2 arteries going to the baby but Ralleigh only had one which restricted blood flow and oxygen goingto her while in the womb. This was another one that we knew before she was born.
Two more things the doctors found while she was in the womb was that she had Polydactyly in her right hand. On her right hand she had an extra thumb which has already been removed by surgery. She also had Deformity of her right foot. Her right foot is bent up to the inner left side of her right leg. The doctors have told us that she can get a cast to get it fixed but will need physical therapy before she can get it. She won’t be able to get physical therapy till she is 1 month old. This can affect her walking when she’s older and the ability to find shoes for her.
Sacral Dimple is another defect, which is a small indentation (dent) in her lower back near her butt. This is caused by an extra vertebrae in her spine. This can cause curve issues in her back as she gets older and bigger. She also has a deformed rib, which we don’t know much about. The doctors told us they won’t know more about these until she gets older.
Ralleigh also has Anal Atresia. This one is very hard to talk about because she is so little and just born. This basically means she was born withoutanal opening aka butthole. She had surgery the day after she was born for this. She has to have acolostomy bag until they are able to reconstruct her anus. If they are unable to do so she will have to have a bag for the rest of her life.
So to sum up due to the VACTERL Syndrome she has: the vertebrae defect, anal defect, tetralogy of fallot, and limb defects. baby girl is at Cleveland Clinic Hospital getting the best treatment an attention she can get. This has been hard on us though due to the fact we live almost 2 hours away and don’t want to leave our girl’s sid. We’ve been staying in hotels and parking in a parking garage which you have to pay to get in. Thedoctors are unsure yet of when she will be able to come home with us since she is not feeding on her own yet and not stable enough.
Any help you could give would be greatly appreciated to be able to pay not only for hotels to be able to stay by her but also anything we would need to make her comfortable and be able to get her healthy and the help she needs. Any money will also help with any medical bills or physical therapy that insurance won’t cover.
Thank you all for being to to understand struggles with family and mostly She is so strong and is such a fighter and she will appreciate every single little thing because the little things matter
THANK YOU ALL SO MUCH!!!❤️