In 2016, after many years of trying to conceive, God blessed us with a miracle baby. We were so excited that we wanted the whole world to know, but we waited to share the news until our three month check up. As the doctor told us we would be having a baby boy, my husband and I looked at each other and smiled with tears coming down our cheeks. Then there was a pause and the doctor told us that our new baby boy was diagnosed with Trisomy 18 (Edwards syndrome.) What is Trisomy 18? My doctor answered with a negative answer. Babies with Trisomy 18 are not compatible with life. Edwards syndrome is a condition that causes severe developmental delay due to an extra chromosome. It has no treatment and is usually fatal before birth or within the first year of life. Trisomy is very rare and we were one of those parents carrying an Edwards baby. Well that word changed our lives. After asking so many questions about this new word we had never in our lives heard before, I had no intentions of backing out of my pregnancy for this was a miracle from God. So we proceeded with the pregnancy and for the next seven months we enjoyed every minute of it with no complications.
Our son was born two months early in March 2016 through a c-section at 2 pounds 10 ounces. It was scary giving birth to an Edwards syndrome baby because of what we knew about trisomy but there he was, a strong, beautiful baby boy. We were so blessed that day and even now because he is still with us. Doctors don’t always know it all. They can only tell you what they know, and what they know is science. Faith and love can be more powerful than anything.
Robert was on a rollercoaster for his first year. At two months he had a g-tube put in his stomach because he had problems feeding by mouth. At ten months he was very sick and on high oxygen, so we decided to let the doctors perform a tracheostomy since he had a small airway. He was in and out of the hospital due to a low immune system. He was always picking up different viruses that put him in the hospital. We had never been parents to a fragile child, so we didn’t know what to expect. Now we are more educated to a fragile child’s needs and are overprotective of who is around him. We also make sure he wears a face mask when going to any hospital for tests or clinic visits. Thanks to his home nurse, Robert has only been hospitalized three times in the last two years. She has educated us in many ways and is a blessing to Robert and to us as well. She has brought some peace into our lives.
Robert has so much fight in him; he is strong! A few things we heard from our doctor was that he will not live, he will not be happy, and he will not be able to do many things. Well that doctor was wrong! Robert is living, he is as happy as can be, and he can do many things. Today our son is almost four years old and he is full of life. It’s not easy raising a fragile child but if you give all your superhuman love and believe in faith, all is possible. I will be my son’s voice. He is the best blessing God could ever give me.