Claremore Daily Progress

October 31, 2013

Kylie's Heart: Claremore toddler faces health struggle

Tom Fink
Staff Reporter

CLAREMORE —

By all outward appearances, Kylie Casey is a healthy, normal, little girl.
Born in July, Kylie is the daughter of Claremore couple, Bryan and Tracey Casey, and the baby sister of Garrett.
Her color is good. She coos and laughs. She interacts with the other children her age at daycare. And,  she’s as wide-eyed and curious as any other baby her age.
But, appearances can be deceiving.
Although young, Kylie’s short life has been fraught with multiple health challenges, foremost of which is her eventual need of heart surgery.
Kylie’s mother Tracy said “Kylie was diagnosed in July with Heterotaxy Syndrome, which is a rare birth defect which involves the heart and other organs,” Casey said. “We’d taken (Kylie) in for a routine echocardiogram for a heart murmur that her pediatrician had heard at her one month check up. Within the first few minutes, I could tell something wasn’t right — just watching the lab technician’s face and reactions to what she was seeing, I knew something was seriously wrong.
“She immediately paged the cardiologist on call and then took us to ‘the room’ to explain everything that they saw,” she continued. “After additional tests, Kylie was diagnosed with Heterotaxy, which is so rare, it’s only found in one in four million births.”
As each case of Heterotaxy differs from another, the specifics in Kylie’s case weren’t encouraging.
“We were told that Kylie’s type (of Heterotaxy) included Levocardia, which meant that her heart was in the correct place, but her (abdominal) organs weren’t,” Tracy continued. “She was also found to have multiple birth defects, among them, congenital corrected transposition of the great arteries (CCTGA), Ebstein’s syndrome and anomalous pulmonary venous return — each of which would be hard enough to cope with and treat on their own, but to hear our baby had all of these conditions ...we were shocked ...heartbroken.”
But Tracy quickly turned her shock into action, “obsessively” researching her daughter’s conditions online and reaching out to support groups and specialists for advice and help.
“Kylie does have one normal sized transverse spleen and most patients with Heterotaxy have either no spleen or polysplenia, so that’s something,” she said, “but I was spending so much time online researching (Kylie’s) conditions, Bryan threatened to turn off the Internet — I was obsessed with finding out as much as I could — with seeing what we could do to help my baby.”
Through Tracy’s research, she was able to find a pediatric doctor at Texas Children’s Hospital in Houston who specialized in Heterotaxy, as well as one of the country’s foremost pediatric cardiological surgeons, Dr. Heather Dickerson, M.D. and Dr. Charles Fraser, M.D., respectively.
“All my hours in front of the computer paid off —I learned of two amazing specialists in Texas, with whom we’ve since had several consultations,” Tracy said. “We also had Kylie undergo more testing — EKG’s, MRI’s, ultrasounds of her intestines as we’d been told some of her organs were transversed (reversed).”
The additional testing eventually did yield some good news, Tracey said, as they were found that Kylie’s heart defects were less severe than initially thought.
“Just in the past few weeks, we’ve learned that, while Kylie does have Heterotaxy and she will eventually need heart surgery — it’s very serious, but not as immediately dire as we were first led to believe,” she said. 
According to Dr. Dickerson’s diagnosis, Kylie has Heterotaxy, with polysplenia and her heart is essentially “inverted” — not transversed completely but “like a 180” of what a normal heart should be.
“Dr. Dickerson told us that Kylie’s heart’s collecting chambers connect to the right pumping chambers, which connect to right outflow tracts and carries blood to her body and lungs,” she said. “Kylie’s heart has an artrial septal deviation — the wall between the blood collecting chambers — which causes her pulmonary veins to drain to the wrong (collecting) chambers. Her heart is able to collect and pump blood to her body, but it does have a tiny hole and she’s going to need surgery fairly soon to patch the hole and move her septum —probably before she’s one year old.”
At this point, the Caseys are taking life one day at a time, with Kylie’s parents appreciative for each day they’re given with their little girl, and doing “whatever it takes” to ensure that their days together will be many.
“We’re so grateful for the encouragement and support of our friends and family — I don’t know how we would have made it this far without all of them — the anxiety I was going through was indescribable, as any parent could understand,” Tracy said. “We would welcome continued prayers from the community, and I’d hope that people know one in 100 babies are born with a heart defect. While pregnant woment need to ask about their baby’s heart after birth, they also need to make sure they get evaluated for a congenital heart defect (CHD).”
An account to assist the family with their medical expenses has been set up at BancFirst (under “Kylie Casey Benefit Account”), and people may follow the family’s journey on Facebook via the “Kisses and Prayers for Kylie” page.
For more information about Heterotaxy, visit www.heterotaxyhope.org.