The Day I Was Told 'Your Daughter Is Going to Die'

The doctor said "your daughter is likely going to die, Ms. Ernst. If she doesn't she will definitely have developmental disabilities and brain damage. Infants can't recover from something like this."
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Kylie was a happy, healthy baby when she was born on December 12, 2011. I had no idea what life had in store for her.

We woke up Christmas morning, December 25th, to open presents. Kylie was 13 days old at this point and had still been a very content baby. Kylie was so fussy - she did not want to be put her on back. She would scream like I have never heard a baby scream. When I picked her up and held her against my chest she would immediately stop and fall asleep.

We went to visit family and around 3:30 I changed her diaper and I noticed that she felt warm. I immediately got this feeling in my stomach that something was wrong. I told a few family members that I was concerned, in an attempt to find a thermometer. Everyone told me that I was overreacting. Normally I probably would have become somewhat self conscious and suppressed my concerns. But I couldn't, I knew something was wrong. I sent someone to the store to get a thermometer.

I took Kylie's temperature -- it was 99.9. I called the on-call physician at her pediatrician's office and awaited a call back. After ten minutes of no call back, I took her temperature again. It was now 102.7.

I packed her up in what seemed like seconds, and we were in the car to go to the emergency room. I ran into the reception area. I told the nurse what was going on in between panting for breath. She took us immediately into an exam room. About 30 seconds later, she came running in with a doctor behind her. The nurse took her temperature while the doctor washed his hands. "104.3" she said to the doctor. My face must have turned white, because she asked if I needed a chair.

The doctor told me that he was going to perform a spinal tap on her. Because of this, the doctor and nurse were on Kylie's back side, and they told me to stand in front of her, and hold her head and arms still. This literally felt like a nightmare.

When they inserted the needle, her body went limp and her chest stopped moving. Thankfully, that only lasted for a second though it seemed like much longer. The doctor said that this reaction was normal because of the pain. The doctor ran out of the room with the sample of spinal fluid, and the nurse started an IV of antibiotics in her tiny little hand.

The doctor came back into the room shortly after the IV was inserted. He explained that the spinal fluid was "cloudy", and that it should be "clear". He said "there will be a NICU ambulance here within the hour. She's being transported." The nurse and I worked quickly to get her bundled up. After about 20 minutes two NICU nurses, a NICU doctor, and an EMT came into the room. They were updated by the doctor and within minutes we were on our way to the regional children's hospital.

She was admitted to the hospital and put in a NICU room as soon as we arrived. She was seen by at least 5 different doctors, and we were waiting for results to come back on a number of tests. In the meantime, they couldn't get her fever to break, and she was starting to become unresponsive. I asked one of the doctors what this meant. I was searching for any answers that anyone would give me. He told me that we had to wait to get the results back. About half an hour later the results were back: Kylie had bacterial meningitis (severe inflammation of the brain and spinal cord caused by an infection). I asked if she was going to be okay, which took every ounce of energy to fight back the tears. The doctor said "your daughter is likely going to die, Ms. Ernst. If she doesn't she will definitely have developmental disabilities and brain damage. Infants can't recover from something like this."

That was my worst fear -- realized. I was totally helpless -- someone had just told me that my little girl was going to die. I stood by her bed and cried while I rubbed her tiny little foot. I cried for a straight six hours. The next day brought only more bad news.

The veins in her hands couldn't handle the IVs anymore. She wasn't getting the antibiotics that she needed -- the only option was surgery. They needed to insert a broviac line to get the fluids into her, which would require an incision in her neck and another in her chest. I had no choice -- so I signed the consent form. I walked with her down to the surgery doors, and then stood outside waiting for it to be over. A nurse finally came out to bring me back to see her and tell me that she was going to be okay, from the surgery at least.

Her fever finally broke later that day. A few days later, we found out that the infection was caused by listeria so her antibiotics were increased to the strongest possible for someone her age. Now it was just a waiting game. Kylie spent three more months in the hospital. Improving little by little, with a few setbacks along the way until she was finally released in March of 2012.

Fast forward three years: Kylie is a happy, healthy, independent little girl who has bypassed all of her developmental milestones. She has such a big personality. If you met her, you'd have no idea that she was so sick -- and you'd never believe me if I told you that the doctors told me she was going to die.

What did Kylie teach me? Perseverance. When I have a tough day that I can't get through -- I think about her. Because even at 13 days old, she could make it through anything.