Caregiver story

Joanne Stearns

Hello. I am a parent of a 4 year old little boy who was diagnosed with PH in Nov 2006. He became quite ill last November and he was admitted to the PICU in what everyone thought was respiratory distress. However, on our third day in the hospital and echo was ordered and they found he had a very large hole in his heart as well as another smaller one and a pda. He was also shown to have severe pulmonary hypertension. He was in heart failure. Because he went undiagnosed for so long, the PH has caused damage to his lungs. He remained very sick until we were finally discharged in Jan 2007.

A heart cath showed that he still had some reactivity and they wanted to try to lower his pressures so they could repair his heart. He was unable to have this surgery until June 2007 due to an inflammatory disorder that needed to be under control first. During surgery they litigated the pda and placed pulmonary artery bands on. For the first time in his life he had an almost normal blood flow to his lungs, and not the high blood flow that he was used to.

He was put on sildenafil and now it was time to wait. He had another heart cath in Sept 2007, and so far it has not seemed to work, although his resistance seems to be a little lower. A lung biopsy shows that he is an early stage 5 ph and this is usually irreversible. But we hold out hope.

Being a stage five, he should be very limited in his activities. He requires no oxygen and his sats remain in the low 90's. He does sometimes have a PH episode and he will need the o2 for a short time.

This is all so new to us and has been a big adjustment. I am wanting to become involved in organizations such as this one [PHA] so awareness can be achieved and people out there know what this is and treatments that are out there. I thank god every day for the wonderful care he receives at Dartmouth Childrens Hospital and to his surgeon/ doctors at Childrens Hospital Boston.


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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.