As with any couple, we had hopes and dreams about our future; and our dreams most often centered around FAMILY. We had visions of how this would all play out. But life was getting ready to throw us a couple of curveballs.
We had our first child, Tyler, on October 16, 2000. Greg and I couldn’t have been happier – he was a chubby, adorable baby, and life was great!
On Monday, April 8, 2002 we welcomed to the world, our second child, Cameron Michael!
A few hours after Cameron was born the neonatal nurse told us that upon doing further testing, Cameron had Heart Disease. We were both shocked and numbed at the mention of these words. She proceeded to say that Cameron’s heart condition was very serious and that he needed to be transported to Children’s Mercy Hospital immediately.
That night, the ambulance didn’t get very far. Less than three blocks from the hospital, the ambulance pulled off the road, and the EMTs could be seen through the window frantically working on Cameron to stabilize him. After they got him to Childrens Mercy and stabilized him, the doctors did an echocardiogram to confirm that Cameron had a heart defect known as Transposition of the Great Arteries, and it would require open heart surgery.
After a long two weeks in the NICU, Cameron had open-heart surgery on April 22, 2002. The doctors confidently switched his arteries with a procedure they consider far more complicated than a heart transplant. Other than the very faint zipper on Cameron’s chest, he is a perfectly healthy, active, bright, creative and silly nine-year-old!!!
Unfortunately our story doesn’t stop there ….On December 6, 2004, after an uneventful pregnancy, I gave birth to Kylie Christine – A GIRL!
By six weeks old, when we expected to begin seeing a lot more interaction, engagement and smiles, it seemed that Kylie wouldn’t really look at us. On April 6, 2005, at Kylie’s four-month “well-visit” and almost exactly three years to the date of Cameron’s birth and diagnosis...we were told by our pediatrician that Kylie had had a stroke in utero and she had Cortical Visual Impairment. The location of her damage from the stroke is in the left posterior part of her brain and affects the area that does visual processing.
At about six months old, Kylie started weekly therapy visits in our home with physical, occupational, speech and vision therapists. It was during these therapies that it became clear that Kylie’s brain injury also caused mild cerebral palsy affecting her right side.
At 13-months-old, Kylie had a 24-Hour EEG and a new diagnosis – Infantile Spasms. Our neurologist explained that this is one of the most severe seizure disorders. With all this going on in her brain, it was no wonder Kylie was stagnant developmentally. Four months of intense treatment later, infantile spasms and hypsarrhythmia were gone! At almost 16 months, we saw her smile at us for the first time!
Although very slow, Kylie’s development has been steady. She spends most of her school day in a special education classroom and receives multiple therapies. The biggest hurdle for us to overcome now is her speech. Today, Kylie is seven years old and in first grade. She loves school and is loved there by many! Her favorite activities are music, swimming and playing in her bounce house!
The biggest difference between Kylie and Cameron’s conditions is that with Cameron, because of research and techniques, doctors knew exactly what his condition was and how to deal with it. Kylie, on the other had, was a complete mystery for many months.
Kylie’s story deals with something much less known, less researched and rarely even heard of by the average person. Different than the surgical repair and recovery Cameron endured along with occasional check-ups now, Kylie’s recovery and development will be a life-long journey.
It is our hope that continued research will eventually lead to new ways to diagnose and treat this condition – perhaps preventing stroke from adversely affecting children like Kylie. It happened with heart defects like Cameron’s – why not stroke?
- Kim Euston