Welcome Friends!
Margaret R
Pennsylvania
Biography
Maggie was born on August 8,2006. We were not expecting her to
be born with any health problems at all. After she was born the nurse brought
her over and showed us that she was missing a thumb on her right hand, and
turned her over to show that she was missing her anal opening. Maggie was
quickly taken away and I got to hold her all of 5 minutes. Maggie was taken to
Pittsburgh Children's hospital where they did surgery on her to create an anal
opening. We thought all was well after that and we could go home and become a
family. Little did we know that was the beginning of our journey. We found out a
few months later that Maggie was born with a condition called VACTERL
Association. VACTERL is an acronym for Vertebral, Anal, Cardiac , Tracheal,
Esophageal, Renal, Limb. It is a group of random birth defects. Maggie was born
with all of the letters , V,A,C,R and L except the T and E. Maggie's diagnosis
are :
V- hemivertebrae and fatty filum tethered cord with syringomyelia ( 2 syrinx
from C3/C4 (Klippel Fiel Syndrome) to T1 and from T5/T6 all the way down ) , C7
hemivertebrae, sacrum ,fused S2, S3.S4 and shortened , and shortened tailbone
(Type 2 Caudal Regression Syndrome) .
A- Low Imperforate Anus w/rectovestibular fistula, partial duplication of the
colon and hypermotility
C- 5 mm ASD
R- left ureter attached to the bladderneck. Right kidney all function is lost
due to severe reflux. Have started cathing every 4 hrs. Grade 1/2 reflux in the
left ureter. Neurogenic Bladder
L - missing right thumb , underdeveloped right hand , radial hypoplasia . and
grade 1 hypoplastic left thumb
allergies to : milk , soy , wheat , eggs , peanut , barley , oat and rye , and
Septra , weight gaining issues, growing issues , and chronic ear infections and
hypotonia , tongued tied ( repaired in June 2007 ) and failure to thrive ,
gastric reflux ( GERD ) , elevated liver enzymes from unknown cause ,
constipation , swallowing issues that maybe related to the GERD . ,asthma
Maggie has had 5 surgeries to date. But on May 15th we will be leaving for
Cincinnati, Ohio for reconstructive surgery on Maggie's urological and bowel
tract. She will be having a Malone/Mitrofanoff/bladderneck with sling/ her right
kidney removed/and colon resection done all in one surgery.So all of it will
make 10 surgeries. Maggie is a happy little girl, who is small but doesn't let
anything get in her way.
When you sign up to stitch for Love Quilts you will get a confirmation of your sign up. If your pattern is a duplicate you will be asked to pick another pattern.
We encourage you to join the LoveQuiltsUSA Yahoo group to check the pattern listing for duplications yourself before you sign up.
The lists of patterns already being stitched are posted on the database. LoveQuiltsUSA is an open group so you can sign up easily and view the patterns right away. Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
Birth Date - August 8, 2006
Main Diagnosis - VACTERL Association
THEME: Sweets
