Julyan's Story: Parent's Letter ProjectVACTERL Association- Julyan’s mom
First for those who are not aware of what VACTERL association is, below is the description and what my son has gone through. He is two-and-a-half years old and he is the strongest, happiest toddler I know. He's an angel and his name is Julyan. We call him Juju.
The following features are observed with VACTERL association:
- V - Vertebral anomalies
- A - Anal atresia (Julyan's grew by the bladder and had surgeries to correct it. He is now on enemas since he cannot clear his bowels out.)
- C - Cardiovascular anomalies (Julyan had supraventricular tachycardia (SVT), and had a hole and a murmur in his heart.)
- TEF - Tracheoesophageal fistula (Julyan had his repaired, had dilations done for narrowing, and is on daily medications for acid reflux. There also are certain foods he cannot eat.)
- R - Renal (kidney) and/or radial anomalies (Julyan has one kidney.)
- L - Limb defects (Julyan fortunately has no limb problems.)
My advice to parents is to have good communication and team work. With each doctor visit or hospital stay, be positive and strong. Our children feel and see our strength which makes them stronger and happier. Celebrate the triumphs.
The Children's National staff is excellent and to this day we still talk to nurses who cared for him when he was younger. When we go to doctor visits, the staff always remembers Juju. They make you feel at home, talk to you about everything, and listen. Children's National is a great hospital. We love all of Juju's specialists, doctors, and the RN staff who have treated him.
Jesse, Juju’s mom