The Challenges:
VACTERL Association is the all encompassing diagnosis link here and here for specific information.
Now head to toe the specific challenges:
Hydrocephalus link here specifically read about aqueductal stenosis in the article.
Ventricular Peritoneal Shunt (VP Shunt) needed to relieve the pressure due to the Hydrocephalus, link here.
Tracheo-esophageal fistula and Esophageal Atresia link here, note this was repaired when Michelle was 2 days old.
Tracheomalacia resulted due to the fistula, link here.
Tracheostomy was needed to help Michelle breathe due to the malacia, link here.
Dysphagia due to the Esophageal Atresia and lack of muscular development, link here.
Ventricular Septal Defect, heart defect number one for Michelle, link here. Note this was repaired when she was 10 days old.
Hypoplastic Aortic Arch, heart defect number two for Michelle, closest type of information link here. Take note that Michelle's narrowing including most of the arch, including the area where the main arteries branch off, picture here. This was repaired when she was 10 days old, and then had to be repaired again when she was 6 months old. This still causes concern today.
Heart Failure, as weird as this may be, this comes and goes with Michelle depending on the stress load her body/heart is having to deal with, link here. Note the end of the article discussing Acute Heart Failure.
Gastro Esophageal Reflux due to the underdevelopment of Michelle's esophagus and stomach, link here.
Hiatal Hernia and Fundoplication Nissen link here
Gastrostomy Feeding Tube to give Michelle the nutrition she needs. This is related to many of her challenges, link here.
Radial aplasia of her right arm, link here. We have chosen not to surgically intervene here since we have met with multiple specialist and most of all prayed. The consensus is that it will not harm her to do the surgery, but it might not be of any benefit either. Anesthesia is a big deal, and we have decided to not risk it with Michelle.
Oligodactyly of her left hand, link here. Again we have met with multiple specialist and have chosen to let her adapt and develop.
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