Update: Rowan’s next surgery is scheduled for September 12th, 2022.

Rowan has VACTERL Association (also known as VATER) and a few other congenital issues. This is not a syndrome or genetic issue, but a collection of birth differences, that when they happen together, are considered an “association”. Scientific study has shown that there is no cause of VACTERL, it is a random occurrence and it is not genetic. Each letter of the name VACTERL stands for a different anomaly, and when a baby has at least three of the anomalies, that baby is considered to have VACTERL. Rowan has a total of 5 out of the 7, and is referred to as having VacTERL (the lowercase letters are those that do not affect him).

• Rowan has irregular shaped vertebrae in his spine and a few missing ribs. Possible Scoliosis.
  
• Rowan has TEF/EA (his esophagus was not connected to his stomach when he was born). This causes some eating issues and sometimes food can get stuck in his esophagus.
  
• Rowan has two cross-fused kidneys.
  
• Rowan was born with an extra thumb on his right hand (polydactyly), now removed.
  
• Rowan has cleft lip and palate.
  
• Rowan has strabismus (crossed eyes), and 6th nerve palsy (his eyes can’t move outward past the center of his eyes).
  
• Rowan had a cyst in his brain and he had brain surgery to remove it.
  

Medical Diagnosis 

• VACTERL Association
  
• Facio-Auriculo-Vertebral Sequence (Hemifacial Microsomia)
  
• Sixth Nerve Palsy and Strabismus (Both Eyes)
  
• Tracheal Esophageal Fistula and Esophageal Atresia (TEF/EA)
  
• Right Unilateral Cleft Lip and Palate
  
• Right Tessier 7 Lateral Cleft
  
• Left Kidney is Cross-Fused to Right Kidney
  
• Vertebral Defects, Missing Ribs
  
• Polydactyly (Right Thumb)
  
• Esophageal Narrowing
  

Surgeries 

• (7-26-17) Tracheal Esophageal Fistula and Esophageal Atresia repair.
  
• (12-19-17) Right unilateral cleft lip/nose repair. Removal of right ear skin tags and right forehead cyst. Placement of ear tubes.
  
• (8-2-18) Cleft palate repair. Tessier 7 cleft repair. Right hand Polydactyly surgery.
  
• (11-5-2018) Strabismus Eye Surgery & Tear Duct Surgery
  
• (7-22-21) Esophageal Scope and Dilation
  
• (11-8-21) Esophageal Scope and Dilation & Endoscopic Knife Therapy
  
• (3-4-22) Brain Surgery – Nasal Dermoid Cyst, Dermoid Cyst of Brain
  
• UPCOMING (9-12-22) Esophageal Scope and Dilation & Endoscopic Knife Therapy

Rowan has had a tiny “pore” on the end of his nose since birth that pus comes out of. At a recent doctor appointment with multiple MRI’s and CT scans we found out that the pore has a tract that travels through his nose and into his brain. the doctors confirmed that the cyst is putting pressure on his brain. This helps explain the constant headaches he’s been having. They will have to cut into my baby’s skull from ear to ear. Cut into his skull, and remove the cyst from his brain and nose.

 

Rowan has some slightly irregular shaped vertebrae in his spine and a few missing ribs. He also has TEF/EA (his esophagus was not connected to his stomach when he was born), which he had surgery to repair when he was 4 days old. Rowan has two cross-fused kidneys (we originally thought he only had one kidney), and he was also born with an extra thumb on his right hand (polydactyly). Rowan also has cleft lip and palate, skin tags on his ear (now removed), and a cyst on his forehead (now removed). Rowan also has strabismus (crossed eyes), and 6th nerve palsy (his eyes can’t move outward past the center of his eyes).

 

V - Vertebral anomalies

A - Anorectal malformations

C - Cardiovascular anomalies

T - Tracheoesophagal Fistula

E - Esophageal Atresia

R - Renal (Kidney) and/or Radial anomalies

L - Limb defects

 

Unfortunately Rowan still has a long way to go. After his brain surgery he will still need:

 

 

We have a medical savings account for Rowan, but it is completely depleted and we’re struggling to pay for his brain surgery and other outstanding medical bills. Any help will be incredibly appreciated a thousandfold.

 

Rowan now 5 years old, our perfect son, and the most perfect and sweet little boy ever. He brings us joy every single day and we are doing everything possible to help him.

 

This open brain surgery is extremely serious and terrifying. If anything, please PRAY!