So what in the world is went wrong with my child? Truthfully we are still finding pieces of the large puzzle that is Kyleigh but for now here is what we know:
Kyleigh was born with VACTERLS Association.
For more information on VACTERLS Association scroll down to the bottom of the page.
Her Diagnoses looks like this:
V – Vertebral Anomalies – Fatty Filum Tethered Cord, Arnold Chiari Malformation (ACM1 – 6 mm herniation)
A- Anal Atresia – Low Imperforate Anus with Rectovestibular Fistula
C – Cardiac Anomalies – Combined AV Canal/ Tetrology of Fallot, Congenital Heart Disease, Residual VSD and Trivial Mitral Valve Leakage (All resolved as of MAY 2009!!!!!)
T – Tracheal Anomalies – Tracheal Bronchus (Bronchus Suey- Pig Lungs) Mildly Reactive Airway
E- Esophogeal Anomalies – GERD (REFLUX)
R – Renal Anomalies – Grade 3 Reflux (LT), Congenital Duplication of the emptying system, upper and lower lobes and Y ureter (RT)
L- Limb Anomalies – Haven’t even MADE it to an orthopedist yet! In our world its life over limb but we think she has averted this letter!
S – Single Umbilical Artery- Single Umbilical Artery
Other diagnosis include:
Intestinal Dysmotility
Colonic Dysmotility & Constipation
Failure to Thrive (more times than we can count!)
Pemphigus (warning graphic pics!)
**currently testing for Allergies, Endocrine and Immune Issues.**
Surgeries:
7/14/06 – Colostomy – Dr. Joe Iocono – KCH
2/27/07 – Open Heart – Dr. Pirooz Eghtesady – CCHMC
3/10/07 – Heart #2 – Dr. Pirooz Eghtesady – CCHMC
8/14/07- PSARP – Dr. Marc Levitt / Dr. Joe Iocono – CCHMC
12/19/07- Colostomy Closure – Dr. Joe Iocono – KCH
1/17/08 – G-tube (mic key) placement – Dr. Joe Iocono- KCH
3/18/08 – Tethered Cord Release – Dr. Bob Owen – KCH
6/11/08- Endoscopy / Biopsies of Esophagus / Stomach – Dr. Ajay Kaul – CCHMC
7/15/08 – Cystoscopy – Dr. Shumyle Alam – CCHMC
9/11/08 – Broviac Placement – Dr. Joe Iocono – KCH
**Kyleigh has had more “procedures” than we care to count… honestly they probably number in the hundreds. A normal doctor’s visit for us is labs, radiology, and THEN a doctor sometimes followed up by ultrasound and more labs. Its something we have gotten used to. At last count Kyleigh has attended 500+ Doctor’s visits, and spent more than a year’s worth of days in the hospital. No wonder we feel at home around these places….**
** KCH= Kentucky Children’s Hospital at University of Kentucky, CCHMC= Cincinnati Children’s Hospital**
Regularly Scheduled “Maintenance” Procedures:
Heart Echo (Q 6 months), Urodynamics (Q 6 months), VCUG & Renal Panel (Q 3 months)
Future Surgeries:
Urology – Ureter Re-implantation, Mitrofanoff (when she is 5+ years old)
Colorectal – Possible Malone
Find out more about VACTERLS Association:
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=VACTERL%20Association
Cincinnati Children’s Colorectal Center
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