Meet Elijah

By Elijah’s Family

Elijah is our five-year IVF miracle.

At my 20-week anatomy scan, we received unexpected results, including a limb difference. Since we had tested all of our embryos and completed NIPT screening with normal results, our doctor was determined to find answers. To investigate further, we decided to move forward with an amniocentesis to understand why Elijah was experiencing growth restriction and other abnormalities. When those results also came back clear, we were left with more questions than answers.

At 32 weeks, I was admitted to the hospital due to preeclampsia, and at 34 weeks, Elijah was delivered by C-section. He struggled to breathe at birth and had to be intubated. The next day, we learned he was in renal failure, and his condition was rapidly declining. Knowing his life was in danger, he was rushed to UNC-Chapel Hill by helicopter, where their team took over his care and ultimately saved his life. Determined to find answers, we proceeded with a full-panel genetic test.

That was when we finally received Elijah’s diagnosis of Cornelia de Lange Syndrome, which explained his medical complexities.

After spending 75 days in the NICU, Elijah was finally discharged and came home with us. Fast-forward to today. He is about to turn ten months old and is absolutely thriving. He has undergone multiple surgeries, and there are more ahead, but his strength is truly inspiring.

Every day, he proves that he can overcome any obstacle.

He may do things in his own time, but watching him persevere is an incredible gift. Elijah is the strongest little boy I know. From the moment he was born, he has faced challenges that most people will never have to experience, but he continues to prove that his syndrome will never define him. He is smart, determined, and full of life. Every day, Elijah shows us that Cornelia de Lange Syndrome will not stop him from doing anything. He moves at his own pace, but he never stops pushing forward. His resilience is inspiring, and his joy is contagious.

He is always giggling, always finding reasons to smile, and always ready to cuddle.

He is the biggest love bug, bringing warmth and happiness to everyone around him. Elijah reminds us daily that strength comes in many forms. He may face obstacles but meets them head-on with a spirit that cannot be dimmed. He is our little warrior, and we are so proud of him.

To the parent who just heard the words Cornelia de Lange Syndrome, I know exactly how you feel because I have been there, too.

It is overwhelming, confusing, and probably not what you expected. But I want you to know that you are not alone. When we found out our baby had CdLS, we were filled with fear and uncertainty. We did not know what the future would look like and were just trying to process everything. But here is what I can tell you now.

Your child is going to amaze you. There will be challenges, but there will also be so much joy.

You will celebrate milestones you never thought about, and each one will feel like a victory. Your child will show you a strength you never knew existed, and in turn, you will find strength within yourself. Take it one day at a time and reach out to others who understand. There is a whole community of parents who have been where you are, ready to support you.

Most of all, remember that your child is not defined by a diagnosis. They are unique, beautiful, and so incredibly loved. You are not alone, and you will get through this.