A Story of Hope and Happiness. My daughter, Aspenʼs CDH Diagnosis and Victory

Created by Jean Baruch, a Pediatric Oncology nurse, in 2004, the Beads of Courage program gives children a bead after they have undergone a hospital related incident. Children who participate in the program receive different colored beads that represent milestones, procedures, and acts of bravery

Our family will be forever grateful to everyone at JHACH who cared for Aspen and to the Tiny Hero and CDH community who shared resources during the difficult time of the diagnosis. Every year, we look forward to our checkups with the CDH team, as JHACH will always hold a special place in our hearts.

Since our release from JHACH in St. Pete, FL, and our return home to NJ, we have been busy with life and what’s considered ordinary baby/toddler activities and their ups and downs. The hospital stay is a crucial first part of the journey, but many parents are concerned about what happens next. Aspen’s story is proof that a CDH diagnosis doesn’t define your child or their future in any way. We are more careful about getting sick, but it doesn’t mean we live in isolation.

Aspen is about to finish her first year at school, which she absolutely loves, and she attends ballet every Saturday morning. She learned her ABCs and started spelling words before she was 2. Right now, she is a very happy and curious 3-year-old who loves going to the playground, playing with Play-Doh, building Legos, and going shopping with her parents!

She owes her miraculous recovery to the entire team who cared for her during her stay at JHACH, especially the two amazing surgeons, Dr. Kays and Dr. Smithers, who were with us every step of the way.

What followed is a testimony to the entire JHACH CDH unit's commitment to saving CDH babies and providing them with a high quality of life. Aspen had her life-saving hernia repair at 4 days old and was extubated 4 days later. Four days after that, she was on one of the lowest CPAP settings and started feeding orally, steadily increasing her feeds and gaining weight. She was planned for discharge 14 days after her repair and went home on 0.1L of oxygen to keep her comfortable during the flight home. 

Our daughter Aspen was delivered 4 weeks later and immediately put on a ventilator as expected.

Ultimately, we decided to relocate temporarily to St. Pete when I was 34 weeks pregnant. We chose to entrust our baby’s care to Dr. Kays and his team after learning about his approach to managing CDH babies and having numerous coversations with his previous patientsʼ  parents.

This is also when we learned about Dr. David Kays at Johns Hopkins All Children's Hospital (JHACH) in St. Petersburg, Florida, from his previous patients’ parents who volunteer for Tiny Hero, supporting newly diagnosed families. I still vividly remember spending the weekend listening to Dr. Kays’ lectures about CDH and reading all the success stories we could find.

Due to our location, CHOP was the first to offer us a consultation. We spent an entire day there undergoing tests and learned that even though our daughter fell into the severe category (her liver was up in her chest cavity), her prognosis was much more favorable than originally thought because she had developed what’s called a “hernia sac.” At CHOP, we were given an estimate of 6-8 weeks in the NICU following a life-saving hernia repair after our daughter’s birth.

A few weeks later, we flew to St. Petersburg to finally meet Dr. Kays and his team for a second opinion. He and his team provided great clarity regarding Aspen’s condition and prognosis, explained his approach, and told us that he gave Aspen a 99% chance of survival. 

Even though it seemed like we couldn’t do much during that weekend, we accomplished a great deal by learning about CDH and speaking with other CDH families who shared their children’s survival stories with us. 

Our 20-week ultrasound was booked for Friday and the worst part of it, besides the suspected CDH, was this huge hopelessness we were being left out with for the weekend. The first few days after learning about CDH diagnosis were filled with tears, fear and desperation to find the best place and doctor who would give our baby girl a fighting chance. 

I was only told that the closest place I can safely deliver my daughter was Childrenʼs Hospital of Philadelphia (CHOP) because none of the hospitals in the NYC/NJ area were properly equipped to handle her case.

At the same time, the high-risk doctor couldn’t give us any information on the severity of it or our baby girl’s prognosis.

The Maternal Fetal Medicine doctor told us that my daughter’s stomach and heart were not positioned correctly and he suspected that Aspen had a Congenital Diaphragmatic Hernia (CDH). Up until that day, all prenatal tests showed that my pregnancy was low risk and my OB ensured us that there were no concerns and everything was going as planned. 

We were so excited to see our baby girl’s face during the anatomy scan! 

My daughterʼs Congenital Diaphragmatic Hernia story starts with a 20-week anatomy scan

What was supposed to be the happiest day of our lives turned into a 4 hour appointment. after what seemed like an endless scan, the doctor told us that Aspen has a life threatening birth defect.