Tuesday, August 08, 2006

Busch family heart story submitted by heart mom Katie Busch.

Our daughter, Kylie, was born in March 2004. She was considered full term. Three months after our daughter was born we started to notice strange symptoms swollen legs, bluish face and extremities, fussiness, trouble breathing which I suspected might be related to a heart murmur doctors had told me was innocent. Her heart murmur was not innocent. Since our daughter was diagnosed with "just an innocent murmur" at birth and it was totally overlooked until it became critical, at 4 months of age she was diagnosed with 2 congenital heart defects called pulmonary stenosis (her case was severe at the time), and atrial septal defect. They are life-threatening without surgery. She had intervention done on her Pulmonary Valve back in Sept 2004. Imagine your world turned upside down when you find out that your child is born with a broken heart. All of a sudden your hopes and dreams that you have for that child are questionable as you do not know what is going to happen. Kylie currently has minimal blockage and the hole in her heart. The hole is a smaller-sized hole, so they just want to watch it for awhile since there are no health risk and there is a chance for it to close on its own. She will need to take antibiotics for any surgical and dental procedure. She will also continue to see her team of cardiologists and be followed by the genetic department.

She currently receives Occupational Therapy, Physical Therapy, Speech, Behavioral and Education Services. Kylie has what is called Sensory Integration Dysfunction. Sensory Integration Dysfunction is the inability of the brain to correctly process information brought in by the senses. Our little girl is hypersensitive. The hypersensitive child will avoid being touched or touching things when at all possible.

She also has been diagnosed with Noonans Syndrome. It is the second most common genetic disorder after Down syndrome. Noonan syndrome is a condition that can affect the heart, growth, and mental and physical development. It is generally recognized by a heart valve defect present at birth, short stature, droopy and wide set eyes, and low set ears. Features that are often present include low hairline in the neck region, striking blue or grey eyes, curly hair, and chest deformities. Affected children may have behavioral and learning problems. The incidence is between 1 in 1000 to 2500 children.

She has been through numerous blood tests, x-rays, hospital stays, doctors visits and ER visits.

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