VACTERLS Association

Harlie

lifeisgood — Sun, 22 Jun 2008 09:33:26 -0400

During my pregnancy with Harlie we learned of her heart and lung defects. They told us that she had a 5% chance of survival after birth, if she made it that far. She did, and as soon as she was born, we could see she had many more problems than we anticipated.

Harlie has Goldenhar Syndrome (a craniofacial syndrome), VACTERAL Association, and Congenital Lobar Emphysema. Harlie’s heart defects are: L-TGA, VSD, intermittent 2nd degree heart block, small right ventricle, 2 small Superior Vena Cava’s (instead of 1 large SVC).

Taylee Gulas

Taylee Gulas — Fri, 30 May 2008 18:51:32 -0400

Taylee spent the first 8 months of her life at Loyola University Medical Center (Ronald McDonald Children’s Hospital). Transported there from her hospital of birth Alexian Brothers Medical. Taylee was born July 19, 2001 weighing in at 2 pounds 12 oz. Taylee was born at 32 weeks of gestation!

Bethan Leatham

Bethan Leatham — Sun, 25 May 2008 14:23:03 -0400

Bethan Leatham

Madeline Moldow

Madeline Moldow — Wed, 23 Apr 2008 13:45:31 -0400

Madeline Claire Moldow was born at 39 weeks in scheduled c-section with no complications during pregnancy and no abnormal test results. When she arrived, she was grunting and dusky so they took her up the NICU. She was sporting a full head of dark hair like my husbands and we thought she was just full of fluid.

Noah Sweeney

Noah Sweeney — Tue, 08 Apr 2008 19:05:39 -0400

Noah Sweeney was born at 33 weeks with VACTERLS syndrome. He has vertebral problems, Imperforate anus, Cardiac defects, TE fistula, and a single kidney. He spent 11 months in the hospital before coming home the first time. He has had over 35 surgeries to correct his problems, however this TEF repair left him with tracheobronchiomalacia. He has had a trach for 2 years, but will hopefully be getting it out this summer.

Update November 2001 - Noah was decannulated in 1998.

Jan Sweeney
jans@netcommander.com