Benjamin G Small Steps to Giant Leaps - Benjamin Gonzales

They are the sweetest people; so patient as they would help me and they love Benjamin.

When Shirley Gonzales was pregnant with her fourth child, doctors told her that her baby boy was exhibiting signs of a rare genetic disorder. Her pregnancy wasn’t easy and doctors were concerned about whether her baby would survive and the quality of life that he would have. When Benjamin Moses Gonzales was born on April 27, 2018, he was immediately sent to the Neonatal Intensive Care Unit (NICU) where he had to undergo a number of tests which led to doctors diagnosing him with Trisomy 18, a condition that causes severe developmental delays and heart and lung defects, which can be life threatening.

“When I first heard of the diagnosis, I was kind of in shock,” shares Shirley. “I had never heard of this! I have three older children and this was the first time I was experiencing a child with special needs. It was all very new for me.”

At the beginning, doctors told Shirley that Benjamin would probably never eat or breathe on his own properly. “He was on oxygen and had a G-tube for feeding,” Shirley explains. “The doctors also said that they found a small hole in his heart and diagnosed him with sleep apnea.”

Benjamin GonzalesAfter spending about two months in the NICU, Benjamin and his family were discharged and referred to Children’s Specialized Hospital (CSH).

Beginning Outpatient Therapy
Shortly after returning home, Shirley was working on helping Benjamin transition and stayed on top of his care. She did notice that he wasn’t hitting developmental milestones and was still having some difficulties with eating, which is when Benjamin’s journey with Children’s Specialized Hospital began. He began physical therapy at the CSH Newark outpatient facility with his physical therapist, Kelly Shane.

“In meeting Benjamin when he was only 3 months old, I had the opportunity to be part of a team on a journey,” shares Kelly. “During those first steps of the journey, all I wanted Shirley to know was that she was doing everything she could for her Benjamin Gonzalesbaby, and that we were on Benjamin’s timeline. We continued to introduce new positions and activities to promote mobility, and continued to celebrate every small win. Those small wins added up and before we knew it, Benjamin would be doing something new.”

“Kelly and the other therapists would give me some tips that I could take and carry-over at home,” Shirley shares about her experience with the therapy team. “They are the sweetest people; so patient as they would help me and they love Benjamin.”

Benjamin loves his sessions as well, with Shirley saying he started off shy but he continued to develop more with each visit. “At first, I think because he was coming from the NICU and was so used to the hospital setting with all the needles and tubes and wires, he was very shy and didn’t engage much. But now, at three and a half, he loves it! He’s not shy at all and loves to be with his therapists.”

Shirley also shares that the gym is Benjamin’s favorite place. “It’s so big and he loves being able to move around and explore.”

Benjamin GonzalesSmall Steps to Giant Leaps
With the help of therapy that Shirley has also carried over into the home setting, Benjamin has overcome many obstacles over the last three years and continues to make incredible strides.

“Benjamin came into this world needing oxygen and G-tube, with the odds stacked against him,” shares Shirley. “Now, the hole where the G-tube was inserted has closed up and he can eat by himself. He’s also no longer dealing with his sleep apnea and he makes eye contact with people, which may seem small but is a huge accomplishment.”

Seeing Benjamin be able to crawl and stand after being born with low muscle tone was also an incredible moment for Shirley, but she shares that the greatest moment she witnessed in therapy was when he took his first steps.

“That was amazing! Kelly was so happy and I was so happy,” shares Shirley. “I knew it would happen because he is developing at his own pace. Those first steps were so worth it and now he’s climbing around.”

“First steps are, and will always be, one of my favorite moments,” says Kelly. “Whether someone is taking them for the very first time or taking them again after an injury, they are always something we work so hard to accomplish, and when that moment clicks and the individual can put two, three, or 10 steps together, it is magic.”

Benjamin GonzalesEyes Set Ahead
Outside of therapy, Shirley shared that Benjamin recently started school and is loving it and all his teachers. He also enjoys watching cartoons, music and playing outside. “He likes to play and is content playing by himself, especially outside. He will grab my hand and guide me to the door when he wants to play in the yard,” shares Shirley. “He also loves anything with music and bright colors. I can sing to him and he’ll just stay quiet and watch my lips move for a really long time.”

When asked about advice for other families, Shirley opens up and shares that it’s most important for families to follow their hearts. “I, of course, recommend that you listen to the doctors, but have the courage to follow your heart and your faith. Benjamin is my baby and he’s so sweet and cute and a miracle to our lives. He came and united our family even more. My older children who are teenagers and young adults help tend to Benjamin and with the help of therapy, he’s walking around and playing. Don’t be scared when you hear a diagnosis. Be strong and listen to your heart and talk to your family. Never give up.”

While Benjamin was in the NICU, Shirley said she learned how important it is to get involved. “The doctors and nurses were amazed that I was there cuddling him and just on top of him all the time,” Shirley says. “It’s so important to be involved and to ask questions. Especially if English is your second language, like me. You may be scared about communicating but always ask for help. You’re never alone. Look for families with similar stories and unite with that community. You’ll get support and hope.”

Shirley shares that her greatest hope for Benjamin is that he continues to grow and develop to be more independent. “Developmentally he may always face some additional challenges, but the diagnosis is not going to limit his life. He’s going to go higher than the limit of the diagnosis. I believe with all my heart Benjamin is going to overcome so much, and I’m already seeing it now!”