My husband and I were so excited at the ultrasound to find out the sex of our second child. We had our son with us. We were joking and talking with the tech. She suddenly grew quiet.
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When the doctor came in and viewed the ultrasound, he was also very quiet. It didn’t really sink in until they told us, “There is something wrong with your baby’s heart.”
They couldn’t elaborate. They made an appointment for a fetal echo. We had to wait and wonder and worry for 4 days until we got her diagnosis. She had tricuspid atresia. One of her valves hadn’t formed so one ventricle didn’t develop. Without surgical intervention, most babies with this defect will not live to their first birthday.
We were terrified and worried, but also hopeful. I began to share her story to educate others. Before this time I didn’t realize that babies could have heart defects, but I learned that 1 in 100 are born with some sort of heart defect. It is the MOST common birth defect.
Iryl (rhymes with spiral) was monitored closely during my pregnancy. A birth plan was put in place for her. We toured the NICU and PICU at our hospital and we were scheduled to meet with the pediatric cardiac surgeon when Iryl decided to come early- at 34 1/2 weeks.
She was born via an emergency c-section. She had a few other surprises for us, too. She also has sacral agenesis (no sacrum), heterotaxy (means differently arranged and usually effects the heart, intestines and spleen but can affect other visceral organs), asplenic, duodenal atresia (intestinal blockage) malrotation, pulmonary stenosis and atrial septal defect.
Despite all of this, she is amazing. She is currently 22 months and doing really well. We still check her pulse oximetry reading daily. This simple test, “pulse ox,” is what can save newborns with undetected congenital heart defects. The device is like a band aid with a light that measures the oxygen saturation. Most people have oxygen saturation near 100%. If a newborn’s is a lot lower, more testing needs to be done right away to check for critical issues.
This screening test is NON-invasive, it’s cheap and it’s quick. It can save lives. For as long as there are congenital heart defects, parents and the medical community need to do everything they can to save these kids. Pulse ox screening should be provided for every baby before going home from the hospital.
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