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Patient story

Hailie Sandstrom

by her mother, Sirlyn

"When I think back, she was very quiet, didn't cry and didn't feed well. She had nasal flaring, chest recession, was a little bit blue around her lips, puffy…but even my general practitioner and nurses never noticed anything unusual, even though the signs were all there."

Sirlyn Sandstrom

My 1 year old daughter was diagnosed with PH when she was nearly four weeks old. She was full-term, though. I was induced because she was stressed. When I think back, she was very quiet, didn't cry and didn't feed well. She had nasal flaring, chest recession, was a little bit blue around her lips, puffy. I blamed myself not realizing. But even my general practitioner and nurses never noticed anything unusual, even though the signs were all there. They also found two holes in her heart. Her consultant didn't start her on medications when she was diagnosed because he thought it will resolve on its own. She was only put on diuretics.

She deteriorated over a short period of time. She was put on sildenafil and bosentan when she was three months old after cardiac catheterization showed quite high pressures. She was ventilated, but her condition didn't get any better. She had lung biopsy done, showing some changes of pulmonary hypertension. They decided to do open heart surgery to close the bigger hole due to patent ductus arteriosus (PDA). They didn't know whether she would get better or worse. The surgeon had to do some work on her pulmonary arteries as well. He said her pressures went down quite a bit after closing the hole. She was on nitric oxide for a week.

She has improved a lot, but she still works harder and gets out of breath. At times she needs oxygen. She also seems to have interstitial lung disease and the consultant thinks she aspirated before the surgery as the huge PDA made her work much harder. I'm just hoping she will outgrow it and that it was the hole in the heart causing the pressures go high. She is monitored in every few months by respiratory and cardiology consultants. She is the happiest little girl I ever seen. I'm hoping science will find a cure.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.