Emery’s CDH Story
Emery was diagnosed with left-sided congenital diaphragmatic hernia (LCDH) during our 20-week anatomy scan. From that moment, our world changed.
We were suddenly faced with fear, uncertainty, countless appointments, and difficult conversations about what the future might hold. Despite all the unknowns, we held tightly to hope and prayed for our little girl every step of the way.
At 39 weeks, Emery was born via C-section after labor failed to progress. She was immediately intubated, and just one day later, she was placed on ECMO. The following day, she underwent surgery to repair her CDH.
Emery’s defect was classified as a Type C defect and was successfully repaired using a Gore-Tex patch.
Just six days after birth, Emery was successfully taken off ECMO. The following day, her repair wound was closed. Every milestone felt monumental, giving us a little more hope that our daughter was going to keep fighting.
Emery remained intubated for 11 days before transitioning to CPAP for two days and then oxygen support for another three days. By day 16 of life, she was breathing completely on her own.
Watching our daughter breathe without support was a moment we will never forget. After everything she had been through, it felt nothing short of a miracle.
Emery spent the next two weeks in the NICU learning how to eat. She worked hard to master both bottle and breastfeeding. When Mom was present, Emery would begin each feed by breastfeeding, with the remainder given through her NG tube. By the time she left the NICU, she was taking approximately 55–60 mL per feed.
After 32 days in the NICU, we finally got to take our baby home.
It was much sooner than we had anticipated, and we were so proud of Emery’s strength and determination. She was discharged without oxygen or feeding support—just our sweet little girl, right where she belonged.
But our journey didn’t end when we left the NICU.
Emery struggled to gain weight and had not yet returned to her birth weight when she was discharged. Her medical team recommended fortifying breast milk to 27 kcal/oz. Hoping to avoid formula, we chose a nontraditional approach and fortified fresh breast milk with freeze-dried breast milk instead.
It worked well for our family.
Emery has always been petite, but around 6½ months old, she finally made it onto the growth chart. It may seem like a small milestone, but for us, it was a huge victory.
Today, Emery continues to amaze us.
She may be small in size, but she is incredibly mighty. Throughout her first year of life, she has remained healthy and has not required a single hospitalization since leaving the NICU. She is thriving, meeting her milestones, walking everywhere, exploring the world around her, and keeping us on our toes every day.
Our family will forever be grateful for the exceptional care Emery received at Children’s Memorial Hermann Hospital under the care of Dr. Matthew Harting and the entire team at the Comprehensive Center for CDH Care. Their expertise, compassion, and dedication gave our daughter the opportunity to thrive, and we are thankful every day for the incredible work they do for CDH families.
Emery’s story is a reminder that even the tiniest heroes can overcome the biggest obstacles. Sometimes, the most beautiful miracles really do come wrapped in the smallest packages.
