When I was pregnant, we found out that my husband and I were both carriers of the cystic fibrosis gene mutation — something we had never even heard of before. The doctors reassured us that there was a 25% chance of our baby having the disease and that there was nothing we could do. We decided to focus on enjoying the pregnancy we had spent two long years hoping for.
When our baby was born, the hospital performed the routine newborn screening and told us we would have to wait for the results. Two weeks later, the phone rang. The voice on the other end confirmed that our baby had cystic fibrosis. In that moment, I felt my world fall apart.
I felt devastated. Like anyone facing a diagnosis they don’t understand, we turned to the internet — only to find even scarier and more discouraging information. Unfortunately, I came across a great deal of outdated and incorrect information that only increased my fear.
My greatest fear was about how long my daughter, Ámbar, would live. After that, my biggest concern was what kind of life I would be able to give her. My husband and I are very adventurous by nature, and it’s important to us to share that same lifestyle with our daughter — without fear, without limits. We didn’t want this diagnosis to mean a life of restrictions for her. We wanted to know if it was still possible to give her a life full of experiences, joy, and freedom.
The next day, we went to the CF care center at Joe DiMaggio Children’s Hospital in Miami, filled with uncertainty and questions. That was also when we found out about Ámbar’s severe pancreatic insufficiency and learned about Creon for the first time. Thankfully, we were met by the most incredible team of professionals. I remember spending about six hours there that day, surrounded by a support group that was warm, kind, and understanding.
From day one, they have made me feel like part of a family. They are warm, compassionate, and their humanity shines through in everything they do. I am especially grateful to Dr. Saunders and Cheryl Kushner, whose dedication and kindness have made all the difference. Their support has brought me comfort, clarity, and hope during a time that could have otherwise felt overwhelming. They have always shared their knowledge with me and given my daughter the best possible love and care. They are truly attentive to her needs, and I can always reach out to them whenever I have a question — they respond quickly and with genuine concern. Knowing that they are there gives me peace of mind and makes me feel supported every step of the way.
The first few months after her diagnosis were surprisingly manageable, largely because I felt deeply supported by the CF care team. My husband and I also became a strong team, facing everything together. I quickly got used to preparing her little apple purée so she could take her Creon every time she ate. And despite everything, we were able to live the normal, outdoor life we had always dreamed of giving our daughter.
Today, Ámbar is almost 9 months old. She is a happy, healthy baby who crawls, plays, and smiles all the time. As parents, we never let ourselves be defeated — we stayed strong for her. She even takes swimming lessons and loves playing with other children. What has helped me the most in caring for my daughter is understanding that it is possible to live with cystic fibrosis.
We no longer feel alone, and we’re no longer afraid of the disease. We’ve come to understand that she can live a completely normal life with a few precautions. Our journey hasn’t been easy, but it has been full of love, resilience, and hope.
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