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When we found out we were pregnant with our second child, Noah, we did not expect to endure such a range of emotions. At Sarah’s 20-week ultrasound, we learned our baby had a cleft lip and palate. Further testing showed us a full picture of his structural abnormalities. We found out that his right ear was malformed, he had no right eye, his right nostril was missing, and his cleft lip and palate were missing. From that point on, we went to the fetal care center at Children’s Hospital and had to have weekly ultrasounds.
Researching
When we discovered the cleft lip and palate, we researched and realized that babies are born with these conditions more often than you think. As more medical conditions started showing up after the next ultrasound, it became a lot harder to research because so many more things were being thrown at us. There was no “true” diagnosis to capture all our baby had. We were able to research some conditions before he was born, but ultimately, we waited until he was born so we could learn as we went.
Our Journey
Between the 20-week ultrasound and when he was born, we felt sad, but since this was our second baby, we knew we had to figure out how to help him out the best we could. Before his birth, we were still figuring out the baby stages of his older sister and how to anticipate the navigation of each new diagnosis.
We were so glad to live where we could access many resources for Noah’s medical journey. We didn’t realize how much Colorado had to offer compared to where we were living in California. It was a blessing in disguise that we moved when we did because of the resources we needed once he was born.
Anchor Center
We learned of one of those great resources and were connected with Anchor Center soon after Noah was born. We realized we live so close to it and have passed it many times, not knowing what it was. Noah was about three months old when we started at Anchor Center, but because of COVID, we were unsure of how involved we should be. By the time he was four months old, we felt ready to get going with Anchor Center services. And we have never looked back.
Having Anchor Center support has taught us so much about his eye condition. We didn’t have an ophthalmologist at the hospital; we just had an ocular surgeon. Seeing the eye doctor and teachers at Anchor Center educated us more about his diagnosis and how we should help him at home and with his vision.
What We Learned
I didn’t know until we started at Anchor how impactful colors were to Noah and that he liked the color orange. It just so happened to be the same color of his room. I didn’t know what it meant that he had nystagmus or how close objects needed to be to him for him to see them. We didn’t know to get toys that are good for high contrast versus random baby toys. Anchor Center taught us to be strategic about what we would get for him. Receiving these services at that time helped strengthen the use of his eyesight and how he was using his vision.
Noah, Today
Noah is now 2.5 years old, walking independently, and navigating really well. He is now more confident when he does things like walk around in places with floor changes (carpet to wood floor, etc.), especially compared to when he first started walking and having difficulty with depth perception.
We still feel like there is more to learn. However, because of Noah’s confidence, we can let him do his own thing, watch and observe what comes up, and work through the obstacles as they come rather than trying to guess what will happen next. In a way, he tells us what he needs. By watching him do things, we learn from him.
Our Future
We’re here now, and as we think about Noah’s future, our family’s future, etc., I think about what will happen when Noah is in middle or high school. I wonder if he will have the same experiences other kids will have – will he go to prom? Will he do those kinds of things? I find myself worrying about those types of things, but then realize that all we can do right now is make sure we’re doing what’s best for him and that he has the best care and support he needs.
We will continue with Anchor Center services to learn how Noah can be his independent self while learning how to compensate for doing things a little differently. Anchor Center has taught us a ton about our son, and we have learned the most from watching Noah grow. When we started at Anchor Center, we never looked back, and we know that the path forward will be filled with joy because of the joy Noah brings into our lives despite what we viewed as many health limitations before he was born.