Disorders of the Corpus Callosum

Prenatal to Toddler: Starting the Journey with Hope and Support

Learning that your baby has a disorder of the corpus callosum (DCC), whether during pregnancy or in the early months or years of life, can be emotional and overwhelming. It’s completely normal to feel a mix of shock, confusion, sadness, and even fear. But as many parents in our community will tell you: you are not alone, and there is reason for hope.

While the road ahead may be filled with questions and some uncertainty, there is also so much love, growth, and joy to be found. Many parents describe the early years as a season of adjustment, but also as a time when they began discovering their child’s unique strengths, personality, and resilience.

Taking Care of Yourself and Your Family

Caring for a baby or toddler with DCC often means juggling multiple appointments, assessments, and therapies—while also managing your own emotions. These early years can be intense, and it’s important to give yourself permission to take breaks, ask for help, and process your feelings.

Try to carve out a little time each day for yourself, even if it’s a short walk, a quiet coffee, or a few deep breaths.
Don’t hesitate to seek emotional support or counseling—many families find this to be a crucial lifeline, especially in the early months after diagnosis.
Remember: strong families are built on support, not perfection. Taking care of your mental health is an important part of caring for your child.

Medical Considerations: Building a Care Team

Many children with DCC will be seen by multiple specialists in their early years. You may be introduced to professionals such as:

Neurologists
Geneticists
Developmental pediatricians
Speech-language, occupational, and physical therapists
Vision specialists
Early intervention teams

It’s incredibly helpful to identify one primary care provider—often a pediatrician or developmental pediatrician—who can help coordinate your child’s care and see the full picture.

Additional Recommendations:

Prepare for some “wait and see” responses from doctors. Because every child with DCC is different, it’s often not possible to predict exactly how they will develop.

Keeping a medical binder or digital file with appointment notes, test results, medications, and contact information for each specialist.

Requesting a copy of your child’s MRI or CT scan early on for your personal records. These can be harder to retrieve later.

Tracking your child’s progress over time—through notes, videos, and milestone checklists—can give you a clearer picture and support future planning.

Early Intervention: Start Early, Grow Strong

If your child is under age 3, we strongly recommend contacting your local early intervention program (often through the school district or health department). These services are designed to support development in areas such as speech, motor skills, sensory processing, and play.

Early intervention is one of the most important steps you can take. Why? Because during the early years, your child’s brain is especially adaptable. Structured support and repeated practice during this time can help build new pathways in the brain and strengthen emerging skills.

Even if your child seems to be doing well, early intervention can offer insight, support, and encouragement, and help you stay ahead of any challenges that might arise.

Some services you might be offered include:

Physical therapy to support gross motor development like sitting, crawling, and walking

Speech therapy (even before your child is talking)

Occupational therapy for feeding, fine motor skills, and sensory regulation

Developmental therapy to encourage play, communication, and interaction

Organizing Information and Milestones

Just as it’s helpful to keep track of medical records, it’s also important to document your child’s development.

Keep a simple timeline or journal where you jot down new skills, behaviors, and questions that arise.
Use photos or videos to track progress—you’ll be amazed by the changes over time, even if they feel small day-to-day.
This information can help you answer questions from doctors, therapists, and teachers more easily down the road.

Recommended Early Resources

To help you get started, here are some trusted resources for families with young children diagnosed with DCC:

Early Intervention Services – Contact your local school district or health department for access to evaluations and therapies (look for “Child Find” or “Birth to 3” programs).

The Early Childhood Technical Assistance Center (ECTA) – National resource hub for early childhood programs and supports.

Family-to-Family Health Information Centers – These centers offer parent-to-parent support and help families navigate healthcare systems.

Zero to Three – Guidance on infant and toddler development.

NODCC Family Support Network – Connect with other families through NODCC’s private groups and regional events.

Downloadable Checklist for New Parents

We’ve created a simple printable checklist to help you stay organized in the early months after diagnosis. It includes reminders for:

Gathering medical records and MRI results
Scheduling follow-up evaluations and therapies
Contacting early intervention
Tracking milestones and observations
Building your support system

Download the New Parent Checklist (PDF)

Parent Voices: What Helped Us Most

Hearing from other families can bring comfort and clarity during uncertain times. These shared experiences remind us that while every journey is different, no one has to go through it alone. Here are a few reflections from parents of young children with DCC.

Read Stories from Other Familes

`In the beginning, I was overwhelmed with all the unknowns. But connecting with other parents helped me see that progress comes in many forms—and it’s all worth celebrating.
`Early intervention gave our daughter the tools she needed to start communicating. It was the best decision we made.
`Keeping a journal of our son’s milestones helped me notice the little wins that were easy to miss in the moment. Looking back, I realize how far he’s come.