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Kailey, 1995

Kailey, born 1995

February 17, 1995 I was being induced to have my second child.  We were told her heart looked great in both ultrasounds but I was a bit nervous as I had a miscarriage before.  By the end of the day, we had our baby girl, all 6lbs 4 ounces and we were all excited. The next day, the pediatrician heard a heart murmur and the next thing we knew all these health professionals come walking into my room.   At that time, my whole world crashed. I can not even try to begin to explain in words how I was feeling.

Kailey was diagnosed with Hypoplastic Left Heart Syndrome and critical Aortic Stenosis and was life flighted to Duke University Medical Center.  When we got to our hotel across from DUMC, we called were told they were still trying to stabilize Kailey and that it did not look good. At 5:00 pm, we got the dreaded call that she was crashing.  They told us no child ever survived with blood gases as high as Kailey's and there wasn't any hope in saving her and that we should have her baptized soon.

Kailey spent the next month still in ICU on and off the vent.  They told us even if she did survive through all of this, she'd be more or less a vegetable because of all the bleeding in her brain.  They told us her arms and feet would probably need to be amputated because they were still black because there was no circulation to her extremities.

In the next two months, her circulation miraculously improved and she was getting color back in her arms and legs.  Our next hurdle was feedings and major reflux. But after all of this, Kailey left the hospital when she was seven months old.  The doctors still were convinced this child would never survive, especially outside the hospital but it was time to take her home.  Kailey was constantly in in and out of ICU at our local hospital for various things.

When Kailey was three years old, she had the Fontan and was home in a month.  But the day after we got her home, she crashed and ended up in the ER at our local hospital.  She was diagnosed with Post Pericarditus Syndrome and they removed the fluid around her heart.   The next morning she woke up and wanted to be vent free and fighting it all the way. Her PC was in awe as to how well she was doing and they extubated her.  Three days later we were home.

In 2000, Kailey was diagnosed with cerebral palsy and epilepsy.    She's on medicine for the seizures but continues to have them. 

I can not imagine my life without my daughter.  She has brought so much joy and happiness to our lives.  She has taught me so much - more than she will ever know and for this I thank her and I thank God for her.  I still have my self pity days and ask God why the HLHS, the CP, the seizures when I realize it was because He knows I can handle it and I''d be the perfect mommy for her.  What a blessing our kids are.

Story by Kailey's mom, Laura - Ohio 

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