7-year-old cerebral palsy patient moves to Springfield for specialty care
Enid Ramos knew it was in her son Carlos’ best interest to leave home on the beautiful island of Puerto Rico and travel hundreds of miles away to get him better care. “I am a person of faith, so I sold my car and most of our belongings and we made the move to Springfield,” said Ramos.
Carlos, who’s six, suffers from cerebral palsy and developmental delays due to a brain hemorrhage he suffered at birth. Along with his other health complications, Carlos was also diagnosed with a severe form of epilepsy. The complexity of his conditions became too much for his doctors at home to handle. “Back home he had really bad seizures every day. He was in and out of the hospital and no matter what they tried, they couldn’t get them under control in Puerto Rico,” said Ramos.
While researching his care options, Enid found out about Baystate Children’s Hospital Specialty Center. “I was all out of options and had nowhere else to turn. That’s when I found out that the best hospital to treat my son was in Springfield, Massachusetts. So, that’s where I went,” said Ramos.
As soon as he started treatment at the Specialty Center, Enid knew she made the right decision. “He is doing so much better since he’s been getting treated in Springfield. When we arrived, he couldn’t walk or talk, now he’s starting to speak, he’s more alert and is learning to walk in a walker,” said Ramos.
Dr. Herbert Gilmore, chief of Pediatric Neurology and the neurologist responsible for Carlos’ care, said Enid’s decision to bring Carlos to Springfield has really made a difference in his care. “When I first met Enid and Carlos, he was having frequent, intense seizures. After evaluating him, I made some adjustments to his medications. So far, we have had luck and we’re seeing that his seizures are now better controlled,” he said. Hoping he would be a candidate for a special procedure, Dr. Gilmore wanted to send Carlos to an epilepsy center in Boston for testing. However, that required him to stay in Boston for a few days. This posed a problem for Carlos’ family. “Since I have no family here, I had no one to watch my 4-year-old daughter while we were away for testing in Boston. Children have to be five years of age to fly, so I couldn’t even send her to stay with my family in Puerto Rico,” she added.
Bringing a family together
That’s when the specialty center team jumped into action. Jane O’Brien, certified case manager and pediatric patient care coordinator, advocates for families with complex and medically fragile children. She helps connect them to resources and navigates them through the health system. “I really wanted to help this brave mom who came a long way for better care for her child. Then I remembered Sam’s Children,” said Jane O’Brien. “Sam’s Children was established to help children and families to fight serious disease by assisting them with services that aren’t covered by insurance.” she added.
O’Brien was able to secure funds to have Enid’s father fly in from Puerto Rico and stay with Carlos’ younger sister. While Carlos didn’t end up being a candidate for the surgery, Enid says she is happy she made the decision to move to Springfield and be under the care of Dr. Gilmore and the staff at the Specialty Center. “They have gone above and beyond to accommodate our family,” said Ramos. “It can be hard being far from family, but we now have a family in the staff at the Baystate Children’s Hospital Specialty Center. I’m blessed to have angels like Dr. Gilmore and Jane O’Brien to help my family through this tough time,” she added.
Unfortunately, it was determined that Carlos wasn’t a candidate for the surgery. “While we hoped this would be a procedure that would work for Carlos, we found that he had too many places in his brain where the seizures were coming from,” said Dr. Gilmore. “Enid in a great person, it’s hard to leave your family and everything you know. Not only did she come a long way looking for better care for her son, she’s also done everything in her power to help him and has followed all recommendations,” he added.
Today, Enid says Carlos is on the road to recovery and doing much better than he was back home. “It’s a blessing to have such amazing people in my life. Dr. Gilmore, Jane and all of the staff at the Specialty Center have changed my life. Not only is my son doing better, I now have my family back together in one place and it wouldn’t have been possible without them,” said Enid.
For more information on the Baystate Children’s Hospital Specialty Center, log on to baystatehealth.org/bch.