The road to parenthood is often filled with excitement and anticipation, but for Tuan and Kelsey Ngo, their journey was marked by unexpected challenges. Married in February 2016, they were overjoyed when they learned they were expecting their first child in April. Little did they know that their path would soon take a dramatic turn, leading them through a series of life-altering events.
As the couple anxiously awaited their 20-week anatomy ultrasound, they decided to find out the sex of their baby and planned a revealing party to celebrate. Everything seemed perfect as the scan began, but within moments, the technician’s demeanor shifted. The technician was unusually quiet, focused, and careful, and when the ultrasound was over, she quietly mentioned that the baby’s heart appeared “atypical.” The technician was unsure why, but she referred them to a high-risk maternal-fetal medicine doctor for a more detailed evaluation.
The next ultrasound was scheduled, and although Tuan and Kelsey tried to remain calm, they couldn’t help but worry. At this appointment, they were faced with devastating news. The doctor explained that their unborn son had a severe birth defect: Congenital Diaphragmatic Hernia (CDH). This condition, a hole in the diaphragm, had allowed the abdominal organs to shift into the chest, severely compromising the development of his lungs. His right lung was barely a sliver of tissue, and the left lung was nonexistent. The baby’s heart was displaced, and surgery would be necessary after birth to repair the diaphragm and reposition the organs.
In those early moments, Tuan and Kelsey found it hard to absorb the gravity of what they were being told. The doctor’s words about survival rates, surgery, and uncertainty echoed in their minds. They were given a 40-50% chance of survival for their baby and were presented with options: delivering at a hospital with an ECMO machine, exploring experimental in-utero surgery (FETO) to improve survival odds, or considering termination. For Tuan and Kelsey, termination was never an option. Their love for their baby was unwavering, and they chose to fight for him, despite the daunting odds.
The couple’s decision to deliver at a hospital in Indianapolis was followed by a flurry of activity: consultations with geneticists, multiple ultrasounds, and difficult conversations. They were informed that, in the last three years, the doctors had only seen a few cases of CDH, and they were unsure of the best path forward. The family’s initial sadness over the prospect of spending Christmas in a hospital, away from loved ones, soon faded into a deeper concern for their baby’s survival. As they grappled with the information, the survival rates seemed to shrink with each passing day.
In a twist of fate, a visiting doctor from Chicago observed their case and suggested that the survival chances could be even lower than originally stated. The survival rate had now dropped to 25%. The doctor recommended considering FETO surgery, an experimental procedure that had shown promising results in some cases. This revelation led Tuan and Kelsey to explore the option of FETO, and they were advised to consult with a specialist in Houston, Texas.
After many difficult discussions and tests, including an amniocentesis and an echocardiogram, the couple faced an agonizing choice. Should they pursue FETO, or was there another option they hadn’t yet considered? In a moment of despair, they turned to online forums, hoping to find others who had experienced similar journeys. It was there that they discovered the work of Dr. Kays, a renowned pediatric surgeon in Florida who had performed numerous successful CDH surgeries. The stories they read about his work seemed too good to be true, and they couldn’t help but wonder why they hadn’t heard about him sooner.
With the support of the Tiny Hero Foundation, which had been instrumental in connecting families to Dr. Kays, Tuan and Kelsey reached out to him directly. Dr. Kays, despite being busy, made time for the couple over the Labor Day weekend, offering them the guidance they so desperately needed. After their conversation with Dr. Kays, Tuan and Kelsey knew they had found the right doctor and decided to cancel their plans for FETO surgery in Houston.
On November 21st, they packed their bags and drove to Florida, where they stayed at the Ronald McDonald House while waiting for their son’s birth. On December 12th, Tuan and Kelsey prepared for the birth of their son, but what followed was an exhausting 27-hour labor, including two failed epidurals. At 1:34 AM on December 14th, after a difficult and traumatic delivery, their son, Tuan Ngoc Ngo II, was born.
Covered in blood from a torn umbilical cord and struggling to breathe, their son let out a weak cry and was immediately intubated. The doctors quickly stabilized him and transported him to the Cardiac Intensive Care Unit (CVICU) for monitoring. Five hours later, the baby was baptized and confirmed, thanks to the kindness of a priest who had driven to the hospital at the couple’s request. The surgery to repair his diaphragm and return his organs to their proper places was scheduled for his fifth day of life. The surgery was successful, but Tuan Ngoc Ngo II’s recovery was more difficult than anticipated. He didn’t respond well to the extubation process and required three attempts before finally stabilizing.
After 21 long days, Tuan and Kelsey were able to hold their baby for the first time. Despite the challenges, including difficulties with feeding and weight gain, their baby slowly began to improve. After a month in the hospital, they were able to return home, but not before staying in St. Petersburg for an additional two weeks to ensure their son’s health was stable. Eventually, they drove back to Indiana to surprise their families, who had no idea they were coming home.
As the year passed, Tuan Ngoc Ngo II, affectionately known as Tuanny, thrived. He battled through a few colds and a stomach flu but reached some major milestones. He rolled over at four months, crawled at six months, and began walking with assistance at eight months. Though smaller than most children his age, Tuanny continued to grow and develop at his own pace, defying the odds.
In February 2018, Tuanny’s parents received the joyous news that they were expecting another baby. Tuanny’s resilience and strength were a constant source of inspiration, and the family looked forward to the new journey ahead.
Tuan and Kelsey’s story is one of resilience, hope, and love. They faced unimaginable challenges, but their determination to fight for their son’s life never wavered. With the support of medical professionals like Dr. Kays and the Tiny Hero Foundation, their son has defied the odds and continues to thrive. Their journey has not only been a testament to their love for their child, but also to the power of community and hope.
