Josie, age 4

Josie was diagnosed at 22 weeks gestation with DORV (double outlet right ventricle). When Josie was born she was actually pretty stable right away. The doctors confirmed her diagnosis of DORV and added TGA (transposition of the great arteries), VSD and pulmonary stenosis.

Josie did have to go to the NICU when she was born but she was only there for 4 days. At a week old Josie started having blue spells and at 5 1/2 weeks old after having a CT angiogram while in recovery Josie coded. So they
scheduled her for surgery a couple days later. Josie's BT shunt surgery went well and did great until she was about 8 months old.

Josie had a heart cath that showed her oxygen levels in her blood were low so she needed to have her full repair. At 9 months old Josie had her Restalli procedure. While Josie was in surgery she went into heart failure and came out of surgery 100% paced. This did not improve so a week later Josie has another surgery to have a permeant pacemaker. After that Josie did well for a few months.

At 12 months old Josie was very sick I took her to the ER and found out she was in heart failure after 2 months of several tests, procedures, and a long OHS we learned that Josie wasn't getting any better and the only option left was heart transplant. So Josie care was transferred to a transplant hospital. Josie did start getting a little better and got to go home for 10 days or so. Then she started getting worse and she needed another surgery to be placed on the an L-VAD the Berlin Heart. 10 days after Berlin Heart she got her transplant.

She had a lot of other surgeries, test, produces and a lot of complications. But now today at 4 years old she is a normal kid. She's in dance and preschool. she loves playing outside and bossing her younger sister around.   

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.