Our daughter Mary Elisabeth (we call her Elli) was born with Down Syndrome. She was born blue and was quickly rushed to SSM Cardinal
Glennon. She had surgery on her intestines within the first week.
For days after her surgery, her lungs were getting weak. She was intubated and machines were coming into her room to help her breathe. They told me to baptize her, but I couldn’t; I wanted to bring her home. Dr. Wooldridge, a pulmonologist, diagnosed Elli with Pulmonary Interstitial Glycogenosis. She needed a lot of steroids in a small amount of time. Within days, machines were leaving her room. Her breathing was getting better. After three months in the NICU, we went home.
Four months later we went to see Elli’s cardiologist about the holes in her heart. A cardiac cath showed one of the holes was large and, two days later, she had surgery. After a check-up a week later, Elli was back fluid around her heart. The scariest part through all of this was that Elli never showed any signs of being sick.
Today Elli is an “on-the-go” little girl and the joy of our life. We had such great care at SSM Cardinal Glennon; it takes a special person to be able to do that job. Our child is unique; she had a lot of unknowns because of her rare disease.
The special part about SSM Cardinal Glennon is that they work with the child and the parents to assess and then find options and solutions. They never give up. They were our family for three months and continue to be to this day.
- Amy Burlage, Elli’s Mom