Know the Signs, Fight for Victory

The Cruz Family

Now that I see things more clearly about my son’s condition, I can tell you our story. My husband and I suffered from infertility for many years until we decided to seek fertility medical treatment. When we started the process, we were scared, anxious, and hopeful of becoming parents. Since the treatment for IVF was very expensive, we had money for only one chance. We made the decision to do it, and we prayed for a miracle.

On December 12, 2016, my egg ( the only one) was transferred. Yes! Glory to God, on December 22, we received the news from the nurse that my pregnancy test was positive, and we were expecting our first child. That day I cried so much from happiness, and I couldn’t wait to tell my husband that he would soon be a dad. Our first three ultrasounds were perfect, and we were very happy.

At 20 weeks pregnant, I found out that I had placenta previa, which means a high-risk pregnancy. I couldn’t believe how we could go through this after waiting for so long. At that moment, my only hope was to pray and be faithful that everything was going to be alright.

Finally, on August 11, 2017, at 5:45 pm, I had in my arms the most precious little boy, my son, Nathan. He was healthy and handsome, but I did notice something. His long fingers really caught my attention. Months go by, and Nathan is turning one year old and has started waking. My husband and I wondered why our baby was falling down so much and had difficulty seeing. I decided to look for an ophthalmologist pediatrician in New Jersey. The ophthalmologist pediatrician said that Nathan was just very nearsighted. The day we picked up Nathan’s glasses, he looked at me, put his hands on my face, and said, “Mami,” and then he did the same thing with his dad. We cried so much at the doctor’s office over my baby’s reaction to seeing his parents for the first time.

In 2021 we moved to North Carolina for work and started looking for new doctors for Nathan and for our daughter Gianna, who was born in 2020. The first thing we needed was an ophthalmologist for Nathan to get him checked for his nearsightedness, which had been getting worse and worse. My husband got an appointment for an ophthalmologist in Durham, NC, at Duke Children’s Hospital. We felt confident in this ophthalmologist because his name is Nathan, like my son. At the first visit, Dr. Nathan told my husband that my son needed to see a cardiologist since his eye issue could be related to heart disease. My husband was alone at the hospital with Nathan, and he was very much surprised and scared and confused. He’d brought Nathan to the doctor for an eye condition, not his heart. After several tests, we learned that our 4-year-old child had an aortic issue, and it was affecting his vision. The issue was likely Marfan syndrome.

When I got the news, I was devastated. How could my son have a heart issue? I cried for months, and eventually, we got all the results, including the DNA testing, which confirmed Nathan had Marfan syndrome. Nathan’s medication started right away, and doctors’ appointments every six months. We can only be thankful for everything we went through to be where we are and for the wonderful staff of Duke Children’s Hospital that made us understand and find the right medical treatment for our boy Nathan. Nathan is six but has the soul of an old man. He knows that he takes medication for his heart, but his sister does not. He asked me, “Why do I have to take heart medication? Is my heart broken?” I am grateful to be able to give my son the medical treatment to live a healthy life, but it can also be frustrating.   I am starting to be able to talk about my son’s Marfan diagnosis after two years. I follow The Marfan Foundation on Instagram and read the stories about other people living with this condition. I realized that it’s not just me. There are people all around the world who might be experiencing the same things that we do.

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The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.

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