Harlie
TrachKid Profile
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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).
Her other defects are: Underdeveloped lower jaw (micrognathia), posterior-rotated low-set ears, dysmorphic left ear with no canal, dermoid, cleft and coloboma in left eye (her eye didn’t close properly), skin tags on both sides of face, vertebral anomalies (missing C6 and C7, C1 fused to the occiput and hemivertebrae L1, L4), missing ribs, misshapen skull, anoperineal fistula and congenital lobar emphysema. This is what we know so far.
Everyday since her birth has been an adventure for our family. Thankfully, the chest mass had shrunk considerably, so that was put on the backburner. At just 4 days old, she had her first heart surgery. Her second heart surgery was at 6 months old. (Her third heart surgery will be the Fontan, at around age 3.) At 11 months old her upper right and lower right lung lobes were successfully removed, allowing the middle lobe room to grow.
She is 100% g-tube fed. At 20 months old, she has had 10 surgeries. Despite everything, she is such a sweet, happy, agreeable baby. She hardly ever cries – only when she’s in physical pain – and she lets all her doctors examine her without complaint. We think she is beautiful. And she is worth every ounce of effort we have to give to keep her safe and sound. We are so grateful to have her.
History
- Blog
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- Member for
- 2 years 10 weeks
Location
- Country
- United States
- State/Province
- Virginia
