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Fighting for My 'Imperfectly Perfect' Daughter With Trisomy 18

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Our society often operates under the misconception that if something is imperfect, it has no value. If the fruit at the grocery store is bruised, nobody wants to buy it. If a car has a little rust or a dent, we are less likely to want to buy it. If an infant is born with trisomy 18 we are told by the medical profession that they will never live a “good” life, and that we should let them go.

When my daughter Lila was 6 days old she was diagnosed with trisomy 18. For those who are unfamiliar with the term, it means Lila was gifted an extra 18th chromosome in every cell in her body at birth. Also known as Edward’s syndrome, it is the most fatal of the commonly occurring trisomies. Most affected pregnancies are miscarried or terminated by 22 weeks gestation. Of those that are born alive, only about 10 percent live to be 5.

When we received her diagnosis, we quickly learned that genetic discrimination is a very real, very serious problem. Lila was denied transfer to our local pediatric hospital. We were told to take her home on hospice and let nature take its course. We were informed that she would always be a “vegetable.” She would never know who we are, and she would always be miserable.

In our hearts, hospice did not feel like the right choice for our family. We sought out a second opinion at a larger teaching hospital two hours away. They fixed Lila’s heart, stabilized her airway and have helped her grow and thrive for six years.

Genetically, Lila is not perfect. Physically she is not perfect either. Lila has to work extra hard to achieve every milestone. Some milestones just haven’t been obtainable to her. That’s OK. What’s not OK is to assume she cannot live a full and rewarding life just because she needs to eat with a feeding tube or use a gait trainer to walk.

While life looks a little bit different for Lila on the outside, inside our family we see her as very similar to other little girls her age. Lila loves kitties. She loves glitter. Her favorite toy is a sequined unicorn with rainbow hair. She enjoys playing games on her iPad. She thinks it’s hilarious when her brothers get into trouble. She is sassy, gives dirty looks and can ignore you with the best of them. She is in the first grade at a local special school, where she is learning to make choices and likes to hold hands with boys in her class.

Lila is a daddy’s girl through and through. She unashamedly will reach for him over me every time. She has a very special connection with her daddy and her youngest brother Holden. She favors them over everyone else. Holden even sleeps in her bed with her most nights.

Lila is not perfect. But who is? Why should she be denied proper medical care or a long happy life with a family that loves her? Her extra chromosome does not determine her worth in this world. It does not exclude her from deserving to be a valued member of society. Disabled people are people too and they deserve to receive all the opportunities their able-bodied counterparts receive.

If my husband and I had bought into the concept that imperfect things have no value, we would have certainly missed out on the past 6 years of love, courage, smiles, trials and growth. We would have missed out on Lila, our perfectly imperfect girl.

Photo montage of Lila with her siblings and parents. She is smiling, blowing bubbles and enjoying life.

This story originally appeared on Kicking It With Kayse.

Originally published: February 18, 2019
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