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Laryngomalacia Won't Take Our Daughter's Laughter

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Dear Laryngomalacia,

You have taken so much from my daughter, from me, and from my family. After a routine pregnancy, I delivered Louisa on August 31, 2014. It was an amazing experience to place her on my chest after she was born. It was beautiful. But you stepped in and stole the moment.

You made her first moments on this earth a struggle to survive. She was robbed of air and without the ability to cry out. I watched as doctors and nurses worked against you to help my daughter breathe. They placed her on a ventilator and transported her to another hospital. She was placed on a cooling protocol to minimize damage from her lack of oxygen. For three days, her temperature was lowered to slow down metabolic functions.

laryngomalacia the mighty

In those first few hours and days, she wasn’t with her family, where she should have been. I was told it would be several weeks until I could take my baby girl home – they didn’t know what was wrong with her. We heard scary words in those first days: oxygen deprivation, seizures, brain damage and pulmonary hypertension. They didn’t know about you yet, laryngomalacia.

At 10 days old, she was scoped and they found you. Doctors operated on her that day in the hopes of removing you. While my daughter improved, it was clear that you were not going to leave that easily.

laryngomalacia the mighty

Eating was nearly impossible for her. I didn’t have a chance to breastfeed. Instead, she had a tube inserted down her throat to provide nutrition.

Slowly, she grew stronger and was able to drink from a bottle. She had her breathing tube removed. She weaned from the oxygen. One by one, the wires were removed from her until one day, there were none. After 23 days in the hospital, we took her home. We took her home free of seizures, brain damage and heart defects.

You are still there — in her slow weight gain, her labored breathing, her reflux, her cry. You have presented her with challenges that no child should have to overcome.

But you will take no more. You cannot take her laughter. You cannot take her smile.  You cannot take her joy. You cannot take our happiness.

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Originally published: April 3, 2015
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