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Cleft-Craniofacial Community Stories

Santiago Moreno

My name is Mirna Moreno, and I am the proud mother of fraternal twin boys. Six weeks into my pregnancy my husband Stephen and I found out we were having twins, and I’ll never forget the look on his face when the doctor gave us the news. We were both so happy with the idea of finally becoming parents for the first time. I was put on bed rest at thirty two weeks and was fortunate enough to carry my babies for thirty eight weeks. I had several ultrasounds and everything checked out okay according to my doctor. We didn’t have a clue that one of our sons would be born with a bilateral cleft lip and a complete cleft palate.

On May 18th, 2005 I gave birth to my baby boys. Orlando weighed seven pounds, and Santiago was five pounds and ten ounces. I remember hearing my doctor say, “He has a cleft lip,” but I did not know what she was talking about. A few moments after they were born my husband brought them to my side and with teary eyes he told me, “He is still so beautiful.” Santiago was taken to the Neonatal Intensive Care Unit (NICU) and stayed there until a specialist came to the hospital to make a mouth piece for him so that he would be able to eat without the feeding tube. In the meantime, my husband and I would visit him every chance we had, but I spent most of the time crying and blaming myself for what happened to my son. Relatives and friends that came to see us at the hospital gave us words of hope that everything would be fine and told me that I shouldn’t worry too much, but nothing would comfort me at this point.

Once Santiago came home he had a hard time eating and slept most of the time. We tried everything to get him to eat, but after missing a few feedings, we decided to take him to the hospital. I was advised to room in with him, and a nurse sat with me and taught me how to feed my baby. After two days I felt confident enough to feed him on my own, but he was still having trouble keeping his formula down. There were several chocking episodes when formula gushed out of his nose and mouth at the same time.

I went back to work when the boys were only six weeks old. We found ourselves in a financial crisis due to my being out on maternity leave for three months with no pay, and Santiago’s surgery was coming up soon. My dear friends from work put together a bake sale and raised enough money for my family in order for Santiago to have his first surgery. Their donations also covered the weekly orthodontist visits he required in order to have his nose/mouthpiece adjusted. There are too many people to name, but you know who you are. We will forever be indebted to you. I like to call these friends, “Santi’s Angels.”

Santiago had his hard palate surgery at Texas Children’s Hospital in Houston when he was only three months old. He quickly healed and was back in the operating room three months later. He didn’t eat for the first two days after the surgery, but I was told that might happen. We used a syringe to feed him, but that didn’t go so well when I tried it. My sister Celina became a pro at using those syringes so she fed him most of the time after his surgeries. He made a full recovery after a few days and he gained all his weight back and then some.

At six months old he had his lip repaired and a set of ear tubes put in. His ENT told us he had a lot of fluid build up, but everything turned out okay. His hearing improved dramatically. I was shocked when I saw him right after his surgery. His facial features changed so much that he looked like a different child to me. I think what scared me the most was when I saw blood coming out of his ears, nose and mouth. His face was very swollen, and he wouldn’t stop crying. Once he was taken to his room we tried to feed him but he wouldn’t sit still long enough to get a drink. Once he calmed down we tried it again, and he was able to drink just a few ounces.

At nine months old Santiago had his soft palate repaired, but this time it didn’t go as well as the previous two surgeries. Once he was taken to his room we tried to feed him, and he started to choke. It took us a few tries to get him to drink for the first time. He stayed in the hospital, and Stephen’s parents were kind enough to room in with him overnight. Three days after the surgery I noticed he was still bleeding and would not stop crying even after I gave him his medications. I rushed him to the Emergency Room because the stitches came apart, but we were told there was nothing they could do. We would have to wait a few weeks and see what damage had been done.

Santiago still has a small hole in his soft palate today but it doesn’t bother him one bit. He is learning to speak very quickly, and when he saw the speech therapist a few months ago, she told us she had no concerns at the time. He sounds nasally, but perhaps the next surgery will take care of that. His next appointment with the surgeon is scheduled for November, so we will see what happens then. Santiago is a happy child, loves the outdoors, plays well with his brother (most of the time), and has a very loving quality about him. He is still not able to drink from a straw and continues to use the Pigeon Bottle.

If someone told me Santiago would be doing this well as a toddler I would have never believed it. My heart just melts when I see him smile because he reminds me of what pure love is. We have all had our share of tears, but I believe things will soon be better. I am lucky enough to have a husband that is strong enough for the both of us; otherwise, I don’t think I would make it. I also believe that God chooses special babies into special families for a reason. My family and I are all glad that we’re in a city where we have some of the best doctors in the world. I would like to thank all the doctors and nurses who have been involved in the well being of my child. May God bless you. I would also like to give Special Thanks to all my family for being so supportive and always having a shoulder for me to cry on.

Last Updated: Sep 11, 2007