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“She is proof that sometimes you just don’t know how far someone can go, despite how poor the outlook may appear. “
Lila Whitaker, trisomy 18, 9/12/2012, Kalamazoo, MI, USA
After an emergency C-Section on September 12, my tiny but perfect daughter Lila Claire was born into this world. She was 4 pounds 9 ounces 17 inches long. She didn’t cry right away and had very low apgar scores until ten minutes old. Immediately the doctors suspected something was wrong and ordered genetic testing. Since my husband and I weren’t considered to be high risk for anything, we had opted out of all prenatal testing.
When Lila was 6 days old we received the terrifying news that she has Trisomy 18. We were given information that stated that our beautiful baby was incompatible with life. We were told that most of these precious babies would die by 22 weeks gestation. If they didn’t, it was highly likely that they wouldn’t live past 15 days old. Most were too weak to survive the birthing process. We were told there was no hope, to enjoy her while we have her and to consider hospice.
Sean and I decided immediately that we wouldn’t be feeling sorry for ourselves. We want baby Lila to have the most normal life possible. We fought to get her transferred to a hospital that would consider her as an individual, not her diagnosis. We had extensive testing done to see how severe her heart defect is and if necessary later in life, would she be a good surgical candidate. We got in touch with physical therapy, occupational therapy and speech therapy to help Lila to learn to use her muscles properly and to learn to eat. We have received training on how to tube feed our daughter safely at home. At twelve weeks old she had successful open heart surgery to close her ASD and VSD.
We’re beating the odds so to speak every day of Lila’s life. She is a complete miracle. She is proof that sometimes you just don’t know how far someone can go, despite how poor the outlook may appear. Lila is currently nine months old and thriving after her heart surgery. We know that someday that may change, but for right now we’re so very happy to have her.