Masina’s CDH Story

Masina's journey living with Congenital Diaphragmatic Hernia (CDH) began in October 2022, even before she was born. During a routine ultrasound, a keen-eyed technician noticed that her diaphragm was not developing as it should and that her left lung appeared smaller. After several more ultrasounds, an amniocentesis, and an MRI, we received the diagnosis: our baby girl had CDH and Turner Syndrome. Every ultrasound brought new uncertainties. One day, we would be told that there was no hernia, but that she was severely underweight and her liver and kidneys were enlarged. The next day, a severe hernia would be detected. The doctors did not seem optimistic about her survival. It was an exhausting and heart-breaking emotional rollercoaster.

The doctors strongly advised us to relocate to a Children's Hospital in Houston, Texas, for the rest of the pregnancy to undergo fetal surgery that could improve Masina's chances of survival. After doing more research on the surgery, something in my gut said going to Texas for the FETO surgery wasn't the best decision for Masina’s case. I dove into hours of research on CDH and joined every support group, forum, and community I could find. The CDH support network from Tiny Hero became our beacon of hope, providing us with the knowledge we desperately needed. Families from Florida and all over the U.S. shared their experiences and recommended Dr. Kays at Johns Hopkins All Children's Hospital in St. Petersburg, FL. They also suggested financial grants and offered emotional support that made us feel less alone in such a frightening time.

With this newfound information, we quickly arranged a consultation with Dr. Kays and his CDH team in December 2022. After a second MRI, more ultrasounds, and a thorough consultation, we finally understood Masina's condition: she had a weakened diaphragm on her left side (eventration), but not a full hernia. Her left lung was smaller but still functional. Dr. Kays was confident in her prognosis and reassured us that she was in excellent hands. For the first time, we felt some relief and knew in our hearts that we were making the right choice for our daughter.

In January of 2023 we promptly sold our home, notified our employers, friends, and family, and moved into a Ronald McDonald House in St. Petersburg to prepare for our Tiny Hero's arrival. Tiny Hero even offered us a financial grant that helped us cover our long-term relocation!

I was induced on February 13th at 38.5 weeks, but Masina did not tolerate the contractions well, so the doctors decided a C-section was the best course to avoid stressing her heart and lungs before birth. Masina was born on February 14th at 8:55 am, immediately placed on a mechanical ventilator, and transferred to the specialized CDH NICU at Johns Hopkins. But from there, she amazed everyone. She was taken off the ventilator the very next day and weaned off oxygen within a week. Just 8 days after her birth, she was discharged from the NICU without even needing repair surgery! Dr. Kays continued to monitor her closely with frequent chest X-rays to watch for any changes in her diaphragm.

In March 2024, after persistent eventration and inhibited lung development, Dr. Kays recommended a diaphragm repair surgery. Masina underwent the surgery on July 26th and was discharged from the NICU just 4 days later! Now, one month post-op, she is back to her active lifestyle, and her diaphragm appears strong. Her left lung has much more room to grow, and her heart has shifted back more toward the left side of her chest.

Masina's story is one of love, faith, and perseverance. Our family, coworkers, friends, fellow CDH parents, Tiny Hero, compassionate strangers at the hospital, and of course, Dr. Kays and his CDH team showed Masina, Dana, and me an incredible amount of love and compassion. I truly believe that love is one of the greatest sources of faith, and it was that faith that gave us the strength to push through such a challenging time so we could meet our miracle, our Tiny Hero, our Masina.

We cannot thank Tiny Hero enough for providing us with the love, support, and hope we needed to keep advocating and fighting for our little girl. 

With sincere gratitude, 

The Atafuas