Early Diagnosis Spurs Parents to Dramatic Action

Categories: Family Stories

Kelsey and Tuan Ngo

Kelsey and Tuan Ngo

Kelsey and Tuan Ngo are a newly married couple from South Bend, Indiana. The exciting news of Kelsey’s first pregnancy was met with great joy from both of their large families. This would be the first grandchild and first great grandchild for this extended family of 14 siblings (11 for Kelsey and 3 for Tuan).

Every pregnant couple looks forward to the day of their first scan and gender reveal. The excited parents looked on as the technician scanned Kelsey’s abdomen, excited to hear if they were having a boy or a girl. Tuan noticed that the technician seemed to be focusing on the baby’s chest, and then said the words every parent dreads, “I’ll have to get the doctor to speak with you.” The news from the doctor was not encouraging. Their baby was diagnosed with a congenital diaphragmatic hernia, also known as CDH.

Baby Tuanie

Baby Tuanie

The doctor first suggested they get a better resolution scan at a nearby hospital, but that appointment was a week later. One very long week for these new parents fretting about their baby. At 21 weeks pregnant, the second scan revealed the worst: some of the baby’s essential organs had migrated into the chest cavity. The doctor presented Kelsey and Tuan with several options, including termination or an experimental treatment. The couple left to ponder their options in a state of shock. During a follow-up appointment two weeks later, they were told there was just a 10-20% chance of survival for their baby.

Grasping at straws, the parents were eager to find out more about the FETO procedure that had been mentioned as one of their options. Fetal tracheal occlusion (FETO) is one technique that temporarily closes the herniated area with a balloon to allow the lungs to develop and increase survival at birth. They met with a visiting doctor whose colleague runs the program at a Houston hospital, and they immediately explored their options for treatment. This option would require the couple to move to Houston for 5-6 months, with the move needing to occur in the next two weeks in order to be within the window of time for treatment.

Desperate to find answers or confirmation of what they should do, Kelsey began looking for other CDH families on Facebook. There she found several families, including one currently staying at our Ronald McDonald House in St. Petersburg, who was under the treatment of Dr. David Kays from Johns Hopkins All Children’s Hospital. This doctor has 20 years of experience, along with a published paper on CDH. He has treated over 300 babies, and at this point in his career, only treats the worst of the worst cases. The most promising news is that he had a 100% survival rate in 2015.

Kelsey immediately emailed Dr. Kays’ office, and soon the Ngos were on a conference call with Dr. Kays and his nurse, Joy Perkins. After the conversation, Kelsey’s intuition told her they should go to Florida for treatment. Soon they were on a plane to visit St. Petersburg and meet with Dr. Kays and his staff. Nurse Joy offered to show them RMH East and RMH Central, where they realized a home was available for them during their potentially long stay.

Returning to Indiana, the couple made plans to journey to Florida for treatment. Kelsey quit her job at a commercial real estate office, while Tuan’s company, where he works in IT, was helpful in allowing him to take an extended leave of absence.

Arriving in St. Petersburg three weeks before the birth, the couple settled in at RMH St. Pete East and were soon becoming acquainted with other CDH families staying at the house. Dr. Kays scheduled Kelsey for inducement during her 39th week, and she mentally and physically prepared for the birth ahead.

Baby Tuan’s birth was a quiet one, for the infant could not breathe and was unable to cry. As the medical team whisked the baby away for intubation, Kelsey got her first look at baby Tuan. Overcome with emotion, all she could think about was what would happen to her baby. Fortunately, Dr. Kays’ team is experienced, and within 30 minutes the baby was intubated. Although baby Tuan needed surgery to repair his hernia, Dr. Kays suggested they wait a few days for Tuan to stabilize.

On January 3rd, Kelsey and Tuan were able to hold their three-week old baby for the first time. One can only imagine the range of emotions experienced by the couple as they breathed in the smell of their infant for the very first time. Tuan had already made preparations for a priest from Sarasota to visit the hospital to baptize and confirm their precious son.

Staying just steps from their baby at RMH St. Pete East, Kelsey and Tuan made themselves at home. Kelsey has a strong gluten allergy, and was relieved that she could prepare her own meals, even though the ones made by community groups were always on hand to supplement her efforts. The couple made friends with staff and volunteers, connecting with other CDH families through Facebook and in the house.

A surprise visit from Kelsey’s whole family the week of New Years was a huge boost for the couple. Their RMH family helped coordinate this surprise visit, helping with the arrangement of rooms at a nearby hotel at a discounted rate. The entire family had a wonderful day visiting the Florida Aquarium and taking in the Florida sunshine. Kelsey’s siblings couldn’t get over the beautiful Ronald McDonald House, full of playthings and great snacks, even at 2am!

Baby Tuan was finally discharged at the end of January, and Kelsey, Tuan, and baby Tuan headed back to Indiana as a family of three, with a new appreciation for Ronald McDonald House. Kelsey comments, “Life is very precious, it only takes one small thing to be wrong and it can change everything.” The Ngos are looking forward to a calmer 2017, full of love for their new child and a wish to give back to others going through a difficult time.

 

Author: RMHC Tampa Bay