CREATING HOPE
Pulmonary vein stenosis is a rare disease and many children fight a courageous battle against this disease.
We all have a role in creating hope for children with pulmonary vein stenosis. As a health care provider, parent, friend or relative, increasing awareness is an important step in improving care and creating hope for children with pulmonary vein stenosis.
We all have a role in creating hope for children with pulmonary vein stenosis. As a health care provider, parent, friend or relative, increasing awareness is an important step in improving care and creating hope for children with pulmonary vein stenosis.
Jaylie's StoryJaylie Joy was born February 2015. She had an echo at 8 days old because her older brother had passed away from PVS in 2012. Much to our surprise, she was also diagnosed with PVS at that echo. We were devastated!! Both of our children had Primary PVS.....they did not have any other heart defects. Jaylie had her first heart cath at 4 weeks old and 5 drug eluting stents were placed in each of her five pulmonary veins. She had another cath at 2 months old and another 5 drug eluting stents were placed, beyond the first set of stents. When she was 3 months old, she had her 3rd heart cath.....this time there was more stenosis beyond the stents, so our dr gave us a choice.....get on the lung transplant list or try a drug called sirolimus. After much prayer, we decided to try the drug and at her 4 month old heart cath she did not have any more stenosis beyond the stents but had some inside the stents, which has been the case for all the succeeding caths. Fast-forward to today........she has had 10 heart caths, 12 stents and she is a thriving, joyful 2 year old!!! When we got her diagnosis at 8 days old, we just knew we would be burying another child, but she is a miracle and she is fighting the fight against PVS. Please know there is HOPE!!! I would like to invite you to visit our family blog to read more about Jaylie and our journey. Jaylie shows us everyday that there is JOY and HOPE amidst this disease.
www.anchorofhopeandjoy.wordpress.com |
Millie's Story
Millie was born December, 2016. She has been diagnosed with Pulmonary Vein Stenosis and Hypo-plastic Left Heart Syndrome. She had her first surgery when she was still in the womb, receiving an in utero stent. Her second surgery was on the day she was born. She had open heart surgery to put in PA bands, performing half of the hybrid band surgery she needs for her HLHS. For her second open heart surgery, they performed a sutureless repair on her left and right pulmonary veins called the Coles procedure. Her most recent surgery was to complete the hybrid band surgery, putting in a stent which allowed her to come off the prostaglandins.
Millie is part of the Losartan drug trial. The plan is to take Millie home and give her all the normal baby experiences while we continue to hope and pray that her pulmonary veins do not progress. If they remain open, Millie will have her next heart surgery at 6 months and hopefully the final HLHS surgery when she is 3 years old. If the veins do progress, Millie won't qualify for her heart surgeries and will require a heart and lung transplant. Millie is a miracle. We hope her story and continued fight can inspire other parents and spread awareness for Congenital Heart Disease
Millie is part of the Losartan drug trial. The plan is to take Millie home and give her all the normal baby experiences while we continue to hope and pray that her pulmonary veins do not progress. If they remain open, Millie will have her next heart surgery at 6 months and hopefully the final HLHS surgery when she is 3 years old. If the veins do progress, Millie won't qualify for her heart surgeries and will require a heart and lung transplant. Millie is a miracle. We hope her story and continued fight can inspire other parents and spread awareness for Congenital Heart Disease
Emily's Story Emily was born with a small defect in her heart called a ventricular septal defect. She also was diagnosed with pulmonary vein stenosis. The hole in her heart was fixed, but despite 2 surgeries to repair her pulmonary vein stenosis, she passed away just over the age of 2. Emily with her bravery beads |