Omar Gonzalez – Trisomy 13

Though this has not been an easy journey, it is one I would pick a million times over, just to meet our sweet boy.

My husband and I first learned something was “wrong” when I was about 11 weeks pregnant, with Omar, who has full Trisomy 13. The doctor told me Omar had fluid in the back of his neck, called cystic hygroma. We were referred to a maternal fetal medicine doctor and were seen the very next day. From then on, there were countless appointments, ultrasounds and eventually an amniocentesis that confirmed the diagnosis of Trisomy 13.

My obstetrician did not believe Omar would live very long after birth. Therefore, she did not monitor Omar during my labor/delivery since she did not feel a c-section was a good option for me, for a baby who was “likely” going to die. Fortunately, my husband and I met with the neonatal team before Omar was born and they were on board with making Omar full code (performing life-saving measures).

Omar was not breathing and was blue when he was born. The neonatal team quickly assisted him with breathing and Omar let out a faint cry. They stabilized him, transferred him to the NICU and was on CPAP for less than 24 hours. After that, he did well on room air. For the most part, he did well during his 2 week NICU stay. We worked on feeding by bottle and monitoring his breathing. He did stop breathing and the NICU nurse quickly gave him oxygen via an ambu-bag and he quickly recovered.

During the 5 weeks at home, his feeding by bottle improved, so we thought. One day, at almost 7 weeks old, Omar began to cry and stopped breathing. I quickly began to give him mouth to mouth and he recovered. After discussing this with his pediatrician, he felt it was ok to monitor him at home as long as he was on a pulse oximeter and to call 911 if this happened again. After the second time this happened that same day, we called 911 and spent the next 3 weeks in the pediatric ICU.
Omar was having about 6-8 apneic events a day, which usually began with crying. Multiple tests were run and even though they found some things that may be causing these apneic events, nothing fully resolved it. We decided to go home on hospice, with the agreement he would receive full medical care and interventions from his pediatrician and specialists.

Although things did not get better at home, I knew something was going to have to change, for better or worse. After being home for 2 months from the hospital, Omar began vomiting daily, for about a month. During this month, apneic events were only happening after vomiting, which was a huge improvement from 6-8 times a day. Omar developed aspiration pneumonia from the vomiting, which required him to be on antibiotics and oxygen. Due to the disagreement in treatment plans, we decided to part ways with the hospice team as we were pursuing more invasive treatments, including the antibiotic for pneumonia, for Omar and they were not on board.

Omar eventually had a g-button placed. His apneic spells became very infrequent, after about a year old. He has had multiple successful surgeries. He is a very strong boy and continues to make progress developmentally. He does continue to have challenges, but we address his needs as they come up.

As of now, Omar is able to sit up independently and pull himself up onto the couch. He is able to take steps with support and in his gait trainer. He also eats about 1-2 ounces of pureed food and is currently learning to drink through a straw. He is also learning to communicate through a communication device. He attends virtual school and is in physical, aquatic, speech, occupational and hippo therapy.

Omar is days away from his 5th birthday. He is a very happy, determined boy who enjoys things with lights and sounds. He enjoys jumping and the sensation of falling. Omar is very loved by his family and loved ones. He also loves people and enjoys bringing their faces to his ears so he can hear them. We are very blessed to have Omar and to have a tremendous support system. We have the deepest gratitude to God, our family, friends, teachers, therapists, doctors, nurses, SOFT and the Trisomy 13 support groups, and so many others who have helped us with Omar.

Though this has not been an easy journey, it is one I would pick a million times over, just to meet our sweet boy.