CHNOLA Shares a Story of Victory & Healing of 6 year old Terrebonne Boy

For more than 65 years, The Louisiana Children’s hospital has provided expert healthcare for children across our state and region. CHNOLA cares for children from every parish in the state from Caddo to Coushatta and Tensas to Tangipahoa Parish. The community can count on pediatric-trained specialists, from the most complex pediatric procedures to the everyday health of children and adolescents to provide extraordinary care.

Children’s Hospital is sharing the story of triumph, victory, and healing of 64 patients from 64 parishes in Louisiana. Amongst those stories shared is the resilient journey of Jude Neal, a six-year-old native of Houma, LA.

As Nicole Neal entered the third trimester of her second pregnancy, she was told that through an ultrasound, her doctors could see a cyst on her newborn son’s kidneys. Nicole gave birth to baby Jude in August 2015 in their hometown of Houma, LA,  and would soon learn that the cyst was just the tip of the iceberg of her son’s life.

In the moments following her baby boy’s birth, while doing skin-to-skin bonding, the mom of two noticed baby Jude’s fingernails were blue. “I immediately thought he was having trouble regulating his temperature. I asked the nurses to come and check on him,” reads a statement from Neal. “She took one look at his fingers and told the other nurse, ‘he’s cyanotic.’ and she looked worried.”

Jude was then taken to the Neonatal Intensive Care Unit (NICU). Due to the numbing effects of her epidural preventing her from standing, Nicole couldn’t join her baby just yet. 3 hours later, doctors and nurses came to Neal’s room to inform her and her husband that their newborn baby boy had a heart condition and needed to be airlifted to the Children’s Hospital of New Orleans immediately for heart surgery. Nicole was wheeled to see her baby boy one last time as the Children’s Hospital critical care helicopter arrived for the newborn. Neal expressed the difficulty of having to stay behind as her baby boy was transported for heart surgery.  “My husband and mother-in-law would make the drive following the helicopter to New Orleans, but I wasn’t discharged yet so I had to stay behind and let him go. It was hard making that mental decision to stay behind and let him go, but my doctors said it wouldn’t be safe to discharge me hours after delivery.”

Once being discharged, Nicole arrived at Children’s Hospital joining her Mother-In-Law and Husband. Jude had just finished his first heart surgery, which was performed by Children’s Hospital Cardiothoracic Surgeon Dr.Tim Pettitt. The Neal’s soon learned their son suffered from a congenital heart defect called Tetralogy of Fallot, which affects normal blood flow through the heart. Due to Jude’s heart being so small, the surgery team placed a shunt in Jude’s heart that would later be removed for a more permanent repair. Jude went on to spend 31 days in the Cardiac Intensive Care Unit (CICU) and 30 days in the NICU. While still in the hospital Jude’s bilirubin levels remained high.

To get to the bottom of this new medical issue, baby Jude needed to undergo a liver biopsy. “The team told me that they believed it could be one of the two things: biliary atresia or Alagille Syndrome. Genetic testing had to be done to confirm which it was,” said Neal. “I thought, ‘well maybe it will be the better of the two,’ but when I googled them, both of them sounded awful. That was the first time I felt like this could really really be bad.”

One month later, The Neals finally returned home with their baby boy, then the call came. The genetics results were in and it was confirmed that Jude had Alagille Syndrome. This genetic condition was the reason for Jude’s congenital heart defect, kidney cyst, and bilirubin levels, among other health issues. “When we found out what it was, my brain switched into autopilot.” Nicole shared. “I was focused completely on taking care of Jude, making sure all his needs were met, he was gaining weight, all the information about this new diagnosis was organized, all his medications were lined up, and all of his doctors’ appointments were scheduled.”

Throughout the first three years of Jude’s life, he had to go through one heart surgery after another. The toddler would go on to have his second heart surgery at 18 months, and another at 3-years old. “That third surgery was the most traumatic,” said Nicole as she reflected on her son’s long journey. “The initial surgery lasted 16 hours, then there were complications, so they had to take him back into the OR to fix everything.”

In addition, at age 3,  Jude started attending daycare,  where he started showing signs of a possible behavioral issue. “He would randomly scream, sometimes even in the middle of the night,” said Nicole. “His speech development was slow, but Jude could communicate with us, and we knew he wasn’t screaming because he was hurt, so we felt it had to be a behavioral issue.” At age four, Jude was diagnosed with severe Attention Deficit Hyperactivity Disorder (ADHD) and Disruptive Mood Dysregulation Disorder (DMDD). Putting a name to the problems Jude was having gave him access to the medications and therapies he needed.

These days, Jude is enjoying life. He is described as an animated and lively six-year-old who loves to sing and dance and will mimic a song he hears on a TV show or movie after hearing it one time. “His dad was a drama major, so he definitely inherited that gene from him,” shared Nicole with a laugh. “He loves to tell jokes and be the center of attention.”

Although Jude’s genetic condition is lifelong, the prognosis is much better now than it was when he was firstborn. He is followed by seven pediatric specialties, including cardiology, hepatology, nephrology, ophthalmology, endocrinology, neurology, and psychiatry. “They could hardly tell me anything about Alagille syndrome when Jude was first diagnosed because of how little research exists on it,” said Nicole. “Now we know that as long as we keep up with doctor appointments and medications, Jude could go on to live a healthy, normal life. He can go to school, go to college, travel, and get married if he wants to one day,” said Nicole.

Jude’s story is number 53 of the 64 stories shared by Children’s Hospital. To learn more or to read the remarkable stories of patients from all over the state of Louisiana, visit https://64stories.chnola.org/