Claremore Daily Progress

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October 31, 2013

Kylie's Heart: Claremore toddler faces health struggle



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.”

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