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Mikaela

October 31, 1997

Mikaela was born on Halloween in 1997, she weighed 8 lbs and 14 oz but was having difficulty breathing, the neonatologist heard a murmur and called in a pediatric cardiologist who diagnosed a VSD. She remained hospitalized for Respiratory distress syndrome for 5 days. We were only home one day when we realized she showing signs of congenstive heart failure, she wasn't eating, breathing fast, cyanotic, etc.
We returned to the NICU where she was diagnosed with the defects that make up Shones (although she was 6 months when her cardiologist first used the name Shone's on her), a severe coarc, supravalvar mitral stenosis, bicuspid aortic stenosis and also a VSD and an ASD. At exactly one week of age, she was airlifed to Children's Hospital of Wisconsin for immediate surgery on her coarc.

The next several months we had a hard time getting her to gain weight, she was on high calorie formula and we gave her the highest calorie foods we could. When she was 9 months old she returned to Children's Hospital of Wisconsin for a heart catherization. They wanted to test the pressures in the chambers of her heart and to place a coil in her PDA. The cardiologist decided it was time again for surgery.

On 11/5/98 she was once again in the operating room at Children's Hospital of Wisconsin. Her surgeon patched her ASD and VSD, tied her PDA and most importantly "shaved" the extra ring of tissue off her Mitral valve. She now has a somewhat "normally" functioning heart, although her aortic valve is small and bicuspid. We are not sure when this will need to be addressed, possibly when she is a teenager. She is now a happy and extremely energetic toddler. The only way to tell she has Shone's Complex is from her very light scars. Since her open heart surgery in November of 98 she has been gaining weight beautifully.