Lacey and her husband were excited to find out she was pregnant with twins. At a 20 week ultrasound, baby B appeared to have a heart problem. After seeing a neonatologist, she was told baby B was fine, but baby A’s brain wasn’t developing normally. “Every week it seemed like I would go in and they would tell me something else was wrong or something was worse,” Lacey said. Shortly after birth, baby A, who they named Tell, was diagnosed with partial Agenesis of Corpus Callosum and a rare condition called Syntelencephaly.
Next Steps with Syntelencephaly Diagnosis
The whole pregnancy, Lacey worried about Tell because she didn’t know if he was going to make it to birth. The minute she held him, however, that worry was replaced with determination. “We’ll do what we need to do to get him where he needs to be,” Lacey said.
Not a lot is known about Syntelencephaly. Doctors told her this disorder is similar to Anencephaly, but Tell was on the more mild spectrum. They said to expect seizures, learning disabilities, and muscle delay, but to be honest, they didn’t know for sure.
Once a month, Tell and his twin brother Ren were observed to make sure both were reaching milestones. When they were six months old, however, Tell was falling behind. Lacey and her husband had early intervention professionals come in to help Tell learn how to roll, sit, kneel, stand, and walk. “My biggest concern is that I want him to have the best life that he can have, and if I could do something to help him, I wanted to help him,” Lacey said.
Diagnosis Brings the Family Together
Lacey’s family has been there for her since she found out about the diagnosis. Her mom lives an hour and a half away but after Lacey told her the news, she made the drive to comfort her daughter in an hour. Lacey’s brother was also a great means of support for her during the pregnancy. Now, he is Tell’s biggest cheerleader and always looks out for him. “He has brought so much joy to us that I don’t know what we’d do without him,” Lacey said.
Ren doesn’t hesitate to protect or introduce Tell to others. Syntelencephaly doesn’t stop these brothers from fighting either. “Their little relationship is amazing,” Lacey said. Lacey recognizes the impact Tell has on his older siblings as well. They are more aware of kids around them and are accepting of their differences.
Best Advice: You Can Learn so Much from These Little Kids
Being a parent is scary and it becomes much more so when your child receives a rare diagnosis like Syntelencephaly. “You have all these fears…but I think you have to have faith that even if it’s going to be hard, it’s going to work out,” Lacey said. Your life won’t be how you thought it was going to be but you can learn so much from these little kids who are housed in these imperfect bodies.