Story of Healing
Near the end of her second pregnancy, Nicole Neal, was told that through an ultrasound, her doctors could see cysts on her unborn son’s kidneys. It wasn’t until he was born in August of 2015 that she would learn that the cysts were just the tip of the iceberg for baby Jude.
In the moments following Jude Neal’s birth in their hometown of Houma, Nicole was doing skin-to-skin bonding with her baby when she noticed his tiny fingernails were blue. “I immediately thought he was just having trouble regulating his temperature. I asked the nurse to come and check on him,” shared Nicole. “She took one look at his fingers and told the other nurse, ‘he’s cyanotic.’ She looked worried.’”
Moments later, Jude was taken to the Neonatal Intensive Care Unit (NICU). Nicole couldn’t join her baby just yet as the numbing effects of her epidural prevented her from standing. Nearly three hours later, doctors and nurses came to Nicole’s room to tell her and her husband that their baby boy, only hours old, had a heart condition and needed to be airlifted to Children’s Hospital New Orleans immediately for heart surgery. Before Abby, Children’s Hospital’s critical care helicopter, took Jude to New Orleans, Nicole was wheeled to see her baby boy one last time before his flight. “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 back” said Nicole. “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.”
By the time Nicole was discharged from the hospital and arrived to Children’s Hospital with her sister to join her husband and mother-in-law, Jude had just finished his first surgery. Children’s Hospital Cardiothoracic Surgeon, Dr. Tim Pettitt performed the surgery, which was a temporary fix. They learned their son had a congenital heart defect called Tetralogy of Fallot, which affects normal bloodflow through the heart. Because his heart was 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 remined 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 two things: biliary atresia or Alagille syndrome. Genetic testing had to be done to confirm which it was,” said Nicole. “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 be really really bad.”
About a month after the Neals returned home with their baby boy, 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 cysts, and bilirubin levels, among other health issues. “When we found out what it was, my brain switched into autopilot,” shared Nicole. “I 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 his doctors’ appointments were scheduled.”
Jude’s first three years of life were marked by one heart surgery after another. He would go on to have his second heart surgery at 18 months, and another at three-years-old. “That third surgery was the most traumatic,” remembered Nicole. “The initial surgery lasted 16 hours, then there were complications, so they had to take him back into the OR to fix everything.”
Also at age three, Jude started attending daycare and there, 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.
Today, Jude is an animated and lively six-year-old. He 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.”
While Jude’s genetic condition is lifelong, the prognosis is much better now than it was when he was first born. 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.
To learn more about the more than 40 pediatric specialties provided at Children’s Hospital New Orleans, head to www.chnola.org.