By Sharlene Ramsingh, mom of CHOC patient Stella
My daughter Stella first came to CHOC when she was just a baby, but our journey really started before she was even born. At my 20-week ultrasound, my husband Havinder and I were so excited to find out the sex of our baby. We were having a girl!
That excitement quickly turned into a feeling of unease when the physician noticed an abnormal growth in the baby’s lung area. From that point on, we had to go back to the doctor’s office for monthly and eventually weekly ultrasounds to monitor the size of the mass. After additional imaging, doctors diagnosed her with bronchopulmonary sequestration (BPS). This means that abnormal tissue or a cyst formed outside her lung but wasn’t connected to her airway.
It was determined that the size of the mass wouldn’t affect delivery, and I was able to carry her to term and proceed with my birth plan. When Stella was born, there was a room full of doctors and nurses in case she wasn’t breathing. Time stood still when she came out and the room was so quiet. Everyone was waiting to hear her cry. And when she let out a tiny little sound, it felt like everyone in the room exhaled at once.
Despite the mass on her lung, she was healthy, so we got to take her home a few days after she was born. Stella’s first few months of life were filled with a series of appointments and tests. When we met Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC, he was able to give us confirmation that Stella needed surgery to remove the mass. At that point, Stella had grown bigger and stronger and was better prepared for the anesthesia required for surgery. We knew that our daughter was in good hands with Dr. Yu. He was patient, caring and we really felt like our daughter was the most important thing to him.
Stella was just five months old when she underwent surgery at CHOC Hospital. Thankfully, surgery went perfectly, and the whole team was great. The pediatric anesthesiologist was amazing and able to deal with my daughter’s small veins.
Before Stella’s diagnosis, I had never heard of BPS. During my pregnancy and up until the surgery I was part of a private Facebook group for parents of babies with BPS. Their success stories helped me manage the stress and anxiety that I experienced during this time. I was also able to ask questions to moms who went through the surgery and who had healthy kids. My husband and I were very private about her condition during my pregnancy, and only told our parents and siblings. We were dealing with our own emotions, and we just didn’t feel up to having to explain BPS over and over again. When it did come up, we would say she a birth defect that lead to a growth in her lungs, and that it would need to be removed.
These days, Stella is doing amazing. She sprints around the house with her five-year-old brother on a daily basis, and she has a voice that will make the windows shake. She goes to swim lessons every week.
The worrisome portion of my pregnancy and Stella’s surgery seem like such a distant memory. You would never know by looking at my daughter that she ever had any complications.
My advice to new parents facing an unexpected diagnosis is to take things one step at a time. Don’t get caught up in the negative thoughts that may happen and trust your child is in good hands with Dr. Yu and at CHOC. Always remember that this too shall pass.