Lauricia had several ultrasounds during her pregnancy that indicated her son Zacchaeus was not developing typically. He measured smaller than what is typical, had an undersized jawbone, and other facial defects. During one of her last ultrasounds at a children’s hospital, the doctor mentioned Zacchaeus had unusually long eyelashes. This feature led him to believe their son had Cornelia de Lange syndrome. That diagnosis was confirmed after his birth.
Cornelia de Lange Syndrome is a Rare Disorder
Cornelia de Lange syndrome occurs in 1 in 10,000 live births. Not a lot of research has been done on this disorder but there are some common characteristics including restricted growth, organ defects, and developmental delays. They also have distinct facial features such as a unibrow and long eyelashes. Many of these children require a trache and a g-tube.
Zacchaeus has had three surgeries so far in his two years of life with more to come. Each surgery improves his quality of life so it is worth the discomfort and stress. “We are just taking it one day at a time and we hope that there will be more research about his syndrome as we continue to grow with him,” Lauricia said.
Joys can be Found Working through the Challenges
“I’d say our biggest challenge is learning how to balance everything,” Lauricia said. Zacchaeus sees four therapists and ten specialists on a regular basis. In addition to taking care of Zacchaeus’ needs, Lauricia also has to make sure her other son gets enough attention. She is able to do everything through the help of their families.
Zacchaeus’ Cornelia de Lange syndrome diagnosis has brought the whole family together. He has taught them all perseverance and how to search for answers when your life is full of questions. “It has been such a joy to learn and accept every phase of development in his journey,” Lauricia said.
Best Advice: Utilize Support Systems and Resources
When expecting parents receive a diagnosis for their unborn child, it is scary. The unknowns can make the wonderful experience of having a child become very stressful. “A lot of people are not fully aware of the extent of resources that are out there,” Lauricia said. If she didn’t have a great support system and utilize additional resources, Zacchaeus’ life would have been a lot more “emotionally damaging” to her. “These children are the biggest blessings and they will give you all the strength you need.”