Every FAMILY has a STORY and this is OURS...
First of all, we'd like to thank you for taking the time to read Santino's story.
In the summer of 2013, my husband Bobby and I were extremely surprised and blessed to find out that our family would be expanding to 5 after the new year. After 5 miscarriages and two wonderful adoptions, we thought our family was complete. God had a different plan in store for us. Olivia and Teyo were anxiously awaiting the arrival of their new little brother.
My pregnancy was unlike anyone else's. At 27 weeks, the doctors stated they were unsure if the baby would survive, let alone make it full term. If he was able to defy the odds, there were many challenges that he would have to overcome. For example, I had extra placenta fluid which was a sign that he was not practicing breathing or swallowing enough which was a huge concern. This was devastating news that only God and lots of prayers could help answer over the next few months. It was all very overwhelming and stressful for our family as we were going to weekly appointments to monitor his health and well being. After the new year, a team of highly specialized doctors at Chandler Regional hospital, put a plan in place to have a doctors ready to go at Phoenix's Children Hospital (PCH). The process would be to deliver the baby, incubate at birth and airlift over to PCH for additional treatment.
With the love, support and countless prayers, Santino was born 3 weeks early at 5lbs 7oz, on Tuesday, January 21, 2014. He was delivered by Emergency c-section because the doctors were worried about his heart and increased placenta fluid. We named him Santino because it means "little saint".
In the summer of 2013, my husband Bobby and I were extremely surprised and blessed to find out that our family would be expanding to 5 after the new year. After 5 miscarriages and two wonderful adoptions, we thought our family was complete. God had a different plan in store for us. Olivia and Teyo were anxiously awaiting the arrival of their new little brother.
My pregnancy was unlike anyone else's. At 27 weeks, the doctors stated they were unsure if the baby would survive, let alone make it full term. If he was able to defy the odds, there were many challenges that he would have to overcome. For example, I had extra placenta fluid which was a sign that he was not practicing breathing or swallowing enough which was a huge concern. This was devastating news that only God and lots of prayers could help answer over the next few months. It was all very overwhelming and stressful for our family as we were going to weekly appointments to monitor his health and well being. After the new year, a team of highly specialized doctors at Chandler Regional hospital, put a plan in place to have a doctors ready to go at Phoenix's Children Hospital (PCH). The process would be to deliver the baby, incubate at birth and airlift over to PCH for additional treatment.
With the love, support and countless prayers, Santino was born 3 weeks early at 5lbs 7oz, on Tuesday, January 21, 2014. He was delivered by Emergency c-section because the doctors were worried about his heart and increased placenta fluid. We named him Santino because it means "little saint".
My sweet and precious baby, entered this world with an extremely rare condition called Arthrogryposis Multiplex Congenita (AMC). Only 1 in 3000 babies are born with AMC and there are over 400 types. To simplify, he had developed multiple contractors (crooked / curved joints in a fixed position) in his arms and legs in the womb as a result of the limited specific joint movement. The cause can be genetic or unknown. In addition to his contractors, he had a small chest to heart ratio and evidence of a small or recessed chin.
My little Santino was a fighter and had a different plan. He came out screaming and shocked us all. The neonatal director said if we believe in miracles as we had just witnessed one. He confirmed what our family had already believed and prayed for. He spent a week in the NICU where he was breathing normal air, eating 2 ounces every 3 hours, gaining weight and thriving. We had several tests done during this time that showed a normal heart, brain, and bone structure. Everyone was so happy when Santino was sent home.
My little Santino was a fighter and had a different plan. He came out screaming and shocked us all. The neonatal director said if we believe in miracles as we had just witnessed one. He confirmed what our family had already believed and prayed for. He spent a week in the NICU where he was breathing normal air, eating 2 ounces every 3 hours, gaining weight and thriving. We had several tests done during this time that showed a normal heart, brain, and bone structure. Everyone was so happy when Santino was sent home.
Things were going very well for Santino and our family the first few weeks. His big brother and sister loved reading and singing to him. His daddy and I enjoyed snuggling with him and caring for him. We were visiting several specialists weekly to follow up on tests done in the NICU and move forward with the best treatment for his physical development. We started physical therapy once a week and cereal casting on his legs to give him the best chance to be able to walk. Although we were very busy, everything was looking good for Santino.
At about a month of age he started throwing up his formula and had some difficulty eating. I took him to the doctors weekly and additional tests were ordered. His formula was changed and the vomiting stopped for a brief moment. At 5 weeks old, Santino was still having trouble eating and now sounded like he was struggling to breath. Daily appointments became the norm. His pediatrician sent him to the pulmonologist and he was sent home on an apnea monitor. The next day and on dad's 36th birthday, Santino scared us all when he was sleeping and the apnea monitor went off. He quickly became blue for 30 seconds and we immediately called 911. He was taken in an ambulance to PCH that night. It was heart-wrenching to see my baby struggle to breath and not have any answers.
We found out 2 days later that Santino was struggling to breath because he was aspirating his milk and had severe reflux. After several attempts to bottle feed and change formulas, it was decided that the best option would be for him to receive his formula through an NJ (feeding) tube. It goes from his nose into his intestines and at two months he is still in newborn diapers and only weighs 8 lbs. 3oz. In addition, he is on oxygen and an apnea monitor because he is having some sort of sleep apnea. To add complexity, the doctors ran several tests including an MRI that discovered that he has a rare brain abnormality which occurred sometime in the development stage. It is called Bilateral Perisylvian Polymicrogyria (BPP). It is so rare, we were told that only 40 cases have been confirmed since 1990. This can explain his difficulties with muscle tone, contractures (AMC), swallowing and breathing. This condition can also cause seizures that are difficult to control and learning difficulties such as speech that can range from mild to severe. I have been at the hospital everyday and night advocating for his health. I struggle deeply with being away from my other two kids and husband but know I need to tend to Santino. My husband is being a strong partner as he is working full time to pay the bills, take care of our two older kids, run the household, doing all the chores while on little to no sleep. With his condition, I will no longer be able to work as Santino will require 24 hour care at home and someone to take him to his daily medical appointments.
We found out 2 days later that Santino was struggling to breath because he was aspirating his milk and had severe reflux. After several attempts to bottle feed and change formulas, it was decided that the best option would be for him to receive his formula through an NJ (feeding) tube. It goes from his nose into his intestines and at two months he is still in newborn diapers and only weighs 8 lbs. 3oz. In addition, he is on oxygen and an apnea monitor because he is having some sort of sleep apnea. To add complexity, the doctors ran several tests including an MRI that discovered that he has a rare brain abnormality which occurred sometime in the development stage. It is called Bilateral Perisylvian Polymicrogyria (BPP). It is so rare, we were told that only 40 cases have been confirmed since 1990. This can explain his difficulties with muscle tone, contractures (AMC), swallowing and breathing. This condition can also cause seizures that are difficult to control and learning difficulties such as speech that can range from mild to severe. I have been at the hospital everyday and night advocating for his health. I struggle deeply with being away from my other two kids and husband but know I need to tend to Santino. My husband is being a strong partner as he is working full time to pay the bills, take care of our two older kids, run the household, doing all the chores while on little to no sleep. With his condition, I will no longer be able to work as Santino will require 24 hour care at home and someone to take him to his daily medical appointments.
The doctors say he might outgrow the breathing and feeding problems as his body develops, but it is hard to predict. Santino has shown us all that he is a fighter. In many ways he has defied the odds already. Our family will do everything in their power to provide him the best care and help him to grow to his full potential just like we are with his sister and brother. He is a loving and sweet little boy with an adorable personality. Just this week he started opening his eyes more. We hope to use this site to keep you updated on the progress he will make over the years. Lastly, thank you for reading, posting encouraging words in our guestbook and passing along his story!
Love and hugs,
Team Santino - Mom, Dad, Olivia, Teyo & Santino Gomez
Love and hugs,
Team Santino - Mom, Dad, Olivia, Teyo & Santino Gomez