Bee's Story

We are just beginning a long and emotional journey. I am 27 weeks pregnant with our second child, a little girl. After our routine ultrasound in July, we were referred to a perinatalogist in order to discover the nature of an extra cavity next to the baby’s heart. Over the last month, we have visited the perinatalogists and a pediatric cardiologist at Children's Mercy Hospital in order to learn that our unborn daughter suffers from a dysplastic or rudimentary pulmonary valve. The leaking valve has caused the pulmonary artery to swell to over 22 mm. She is due in November, and we know that she will spend a great deal of time in the NICU. She will be faced with surgery sometime within the first 6 months of life to correct the valve and repair the aneurysm. The timing all depends upon her condition at birth. She will require cardiac care throughout her entire life.

Along with this heart defect, our daughter has also been diagnosed with 22q deletion syndrome, where a portion of one copy of chromosome 22 is missing. This syndrome is accompanied by many potential problems, including feeding difficulties, autoimmune disorders, cleft palate, heart defects, kidney defects, learning disabilities and many others.

Our son, a kindergartner this year, knows that his little sister is sick, but not how sick. We hope that he will be able to cope with the attention and extra care that she will be getting.

My husband is a teacher, and I work as a data entry operator for a small Eudora business. We know that despite our insurance, we will be faced with sizable medical bills. Considering the care our baby will need, I may not be able to return to work for some time. I'm grateful that my employer is a strong believer in health and family coming first, so I will be able to work from home part of the time.

I heard about this organization while listening to the LAZR on the way home from work yesterday afternoon. I don’t normally listen to commercial spots, but I'm glad I did this time.

Elizabeth (Bee) Love