Kayli R.
Ohio
Birth Date: June 22, 2017
Diagnosis: Double outlet right ventricle, Ebsteins Anomaly, Tricuspid Atresia, Pulmonary vein stenosis
Theme: Paw Patrol
Due Date: March 1, 2022
Kayli's Story
The doctors knew there were defects before birth. They initially thought a few surgeries over the years and she would be OK. Delivery was induced at 36 weeks because she stopped growing. They were afraid she would die in utero. She was born June 22, 2017 at 4 pounds 4 ounces. When only a couple hours old she was prepped for the Cath lab. They were trying to open her Atrial septum for better blood flow. She went into heart block twice, so they stopped. At two weeks old, they went back in and had success at opening the Atrial septum. However, they discovered other heart defects and an enlarged heart. She would now need a new heart. She went home at 5 weeks.
At 3 months old she went in for another Cath before she was sent to Nationwide Childrens' Hospital in Columbus. There she had testing for a heart transplant. The Cath lasted a lot longer than it was supposed to. The doctors gave the devastating news that she now had Pulmonary Vein Stenosis. She would now need a heart and lung. We weren’t given much hope. She was so small and not a good candidate. Everywhere they sent her information turned us down.
At 10 months old, she had another Cath. The doctors discovered her left lower pulmonary vein was completely closed and were just able to get a 5 mm stent in the upper. They said they would have to go in every few months and balloon it open. The next Cath was unsuccessful. Nationwide doctors agreed to meet with us to see if there were any options. Now finally at 18 months she was finally big enough and doing well. She will be headed to Nationwide to do testing to see if she will be eligible to put on the transplant list. It is still a long process, but we have faith. Please pray for a good outcome. There is no way to tell how long her heart and lungs will last.
Editor's note: By the time Kayli's quilt opens for signups, she will have been inpatient for over 290 days.
