At 20 weeks pregnant, I found out that my little girl had left-sided congenital diaphragmatic hernia (CDH). I had never heard of CDH before her diagnosis, and suddenly, we were learning everything we could about a condition we never knew existed.
We began seeing specialists in St. Louis, Missouri, at Barnes-Jewish Hospital. Her CDH was severe. She had essentially no functioning left lung, and her heart had been pushed toward the right side of her chest. Her stomach, small intestine, and large intestine had moved into her chest, leaving little room for her left lung to grow and putting pressure on her heart and right lung.
Throughout my pregnancy, we traveled to St. Louis every three weeks for appointments to make sure she was growing and that everything was continuing to look okay. As we got closer to delivery, I began having non-stress tests twice a week to make sure she was strong enough to handle being born.
At 37 weeks, I was induced so that she could be delivered in a controlled setting and receive the care she needed right away.
When she was born, she gave one tiny cry before being taken from me. She was placed on oxygen and transported to another hospital across the bridge, where she could receive specialized care. Finally, I was able to go see my baby girl.
Forty-eight hours after she was born, she had her first surgery to repair her CDH. She did incredibly well, but she spent her first full month of life in the NICU.
Her journey didn't end there.
In December, she became sick with RSV. Then, at the end of January, we learned that her CDH had re-herniated, meaning some of her abdominal organs had moved back into her chest. She needed another repair, but thankfully, this time she only spent about a week in the NICU.
In March, we faced another frightening chapter. She began vomiting what appeared to be old blood. After multiple emergency room visits, doctor appointments, and many phone calls with her CDH team, we learned that she had developed a paraesophageal hernia, a complication related to her CDH repair. Her stomach had moved upward near her esophagus, causing the bleeding.
And now, we have learned that her CDH has re-herniated again. We don't yet know the full extent of it and will need another CT scan to determine what comes next. There is a possibility that she will need another surgery to repair both issues.
Through every difficult moment, this little girl continues to amaze us.
After everything she has been through—the surgeries, the NICU stays, the hospital visits, and the complications—she remains one of the happiest babies with the biggest smiles. She continues to push forward every single day, doing her best to be as normal as possible.
She has shown us a strength that I never could have imagined.
She is, without a doubt, my little miracle.
