Tuanny's Story - Congenital Diaphragmatic Hernia (CDH)
We are Tuan and Kelsey Ngo, and we would like to share our CDH story with you! We live in South Bend, IN and were married in February 2016. Shortly after, in April, we found out we were expecting! We anxiously awaited our 20-week anatomy ultrasound, as we had decided to find out the sex of the baby and have a revealing party.
At the start of the scan, it was plainly obvious (almost instantly!) that there was a little boy in there, but it also became apparent that something else was going on. The technician became quietly focused, and said very little as she continued the ultrasound. Upon finishing, she told us that the heart’s position was "atypical" and was something she'd never seen before. Our OB did not know why the heart was moved and referred us to a high-risk Maternal Fetal Medicine doctor for a more detailed ultrasound. We didn't want to needlessly worry over having very little factual information, so we had the revealing party as scheduled and didn’t think too much about our next ultrasound one week later.
It was at that scan that we received our worrisome information. The technician, focused and pensive, told her assistant to leave the room, and shortly after the tech left as well. The MFM doctor arrived, greeted us, and calmly told us that our baby boy had a severe birth defect. He gave straight-forward facts: the defect was known as a Congenital Diaphragmatic Hernia, and from what could be seen, our son had a significant amount of abdominal organs in his chest; the right lung was a sliver of tissue, severely compacted, and the left lung was nonexistent; the function of the shifted heart was unknown; surgery would be necessary after birth so that the hole in the diaphragm could be repaired and organs returned to their proper places. The doctor then left briefly to let us get our bearings.
We heard the news through a filter: all we gathered was "defect," "severe," and "surgery." We couldn't believe that our newly born baby boy would have to go under the knife, and all we really understood was that a hole in the diaphragm had allowed organs to migrate into the chest. It sounded simple but ominous.
Confused, we met with a geneticist and the MFM doctor for more details. They told us that they had only seen a few CDH cases over the past three years, and the protocol was that we would need to deliver at a hospital with an ECMO machine. For us, that meant choosing a children’s hospital in Indianapolis. It sounds petty, but at the time, we were simply sad that since our due date was right before Christmas, we’d be stuck in a hospital having to watch our baby undergo surgery during our first holiday season together, all without our families being able to be close by to celebrate our son’s birth. As the information continued to be given to us, we realized that Christmas was the least of our concern: they gave us the average chance of survival (40-50%), and told us our options: delivery of the baby in Indianapolis, exploring an experimental in utero surgery (FETO) to improve our survival chances, or termination.
We immediately said no to the latter two options, chose a hospital at which to deliver, declined the amniocentesis to discover whether there were genetic issues, and left with a few informational pamphlets. We were dazed as we walked to the car, and shed a few tears from the fact that we were just given a large volume of information over a short period of time, and didn’t even retain half of it. The pamphlets were informative, but discouraging: 40% chance of survival was not the 100% we had our sights on during the pregnancy thus far.
A couple of weeks later, we had another detailed ultrasound. A visiting Chicago doctor did the scan. He observed liver in the chest, and decreased our survival chances to 25%. He also shared that he had seen more CDH cases than the doctors in our area, and some who underwent FETO had better outcomes. The doctor was a good friend with a specialist who was spearheading the FETO program in Houston, TX at a children’s hospital. He encouraged us to speak with him personally and to explore this option.
We spoke with the doctor in Houston, who looked over our scans and gave us a more realistic percentage of 10-20% chance survival. He explained FETO and gave us a timeline of when we would need to pursue this option. Overall, it was still bleak, but we wanted to give our son the best chance of survival and FETO was our last option to increase our odds. We compared a few other hospitals who offered this treatment.
After many days of tears, research, ultrasounds, an amniocentesis (necessary before FETO), and an echocardiogram, we decided to go to Houston. However, in a moment of despair, we reached out online (something very atypical of us) to ask about others’ FETO experiences, as we were still apprehensive. It was during that online discourse that Dr. Kays in Florida was brought up instead. We had heard of him before, but figured that he was simply the doctor that Floridians went to, not a couple like us 1,000+ miles away. Upon further research, however, we discovered that many from around the country travelled to Florida to have their babies delivered and cared for, all under Dr. Kays’ expertise.
The data seemed too good to be true. We played Devil’s Advocate to somehow “debunk” what appeared to be fabricated results. Why wasn’t everyone told about Dr. Kays? How could we have gotten grim information when this other seemingly “perfect” option existed? And, more importantly, if everything we were reading was true, why weren’t we pursuing it?!
Amidst a flurry of calls from Houston, we contacted Nurse Joy via the contact information on the Tiny Hero site (one of the first places we found information on Dr. Kays), and spoke with Dr. Kays over Labor Day weekend; he made time for us even though he was supposed to be on his way to dinner with his visiting daughter! We were scared to change our minds once again, but after speaking with him, we knew in our hearts what direction to take. The rest is history: we cancelled our FETO plan, had a consultation with Dr. Kays and Joy, and secured our date of induction.
We drove to Florida on November 21st, stayed in the Ronald McDonald House while we waited to be induced on December 12th, and on December 14th at 1:34 AM (after 27 hours of painful labor, including two failed epidurals) we welcomed Tuan Ngoc Ngo II into the world. Covered in more blood than expected (his umbilical cord tore and he lost a lot of blood), he uttered a soft, struggled cry, and was immediately intubated. He was stabilized, and taken to the CVICU where he was baptized and confirmed five hours after birth (we had contacted a priest from Sarasota a month prior and he graciously drove to us in the early morning!). His surgery was done on his fifth day of life in his CVICU room, as he was too sick to be moved to the OR. He was missing 25% of his diaphragm, and had small and large bowel, spleen, and some stomach in his chest. A piece of spleen had broken off and affixed itself to his omentum, so Dr. Kays removed that before doing the repair and replacing the organs. He did not need ECMO.
Tuanny (as we affectionately call him) had a successful surgery but was for some reason more sick than anticipated. He did not extubate well at all and required three extubations before finally reacting favorably. We finally held him after 21 days. He did not easily nurse, and that was an extremely difficult time to get through; we kept reminding ourselves that as long as he was being nourished, he would learn to nurse or drink from a bottle at his own pace. We were discharged after a month in the hospital but had to stay in St. Petersburg an extra two weeks before returning home as Tuanny was not gaining weight. Finally, after improving feedings and gaining some much needed weight, we secretly drove back home to Indiana and arrived on January 28th to surprise our families! They had no idea we were returning!
Tuanny is now a year old, already had his annual check up with Dr. Kays, and has done extremely well at home. He battled through a few colds and had a bad bout of stomach flu and an ER visit but reached some great milestones: rolled over at four months, crawled around between six and seven months, and has been scaling the walls and walking with assistance since eight months. He now eats like a horse (he skipped baby puree and went straight to “big people food”), and although smaller than an average baby, is on a safe growth curve and is happy and active. He expects to start loving on and teaching his new brother or sister in February 2018!