Our daughter Sophia was born in 2013, and spent nearly a month in the neonatal intensive care unit fighting to survive. When we finally got to take her home, we knew that we would spend the rest of our lives fighting alongside her.
Sophia was diagnosed with spastic quadriplegic cerebral palsy and epilepsy before her first birthday. Children with CP can have a wide range of outcomes, but Sophia’s is more severe. She can’t walk or sit independently or speak words. We feed her, change her diapers, bathe her, dress her, do her hair, take her to doctors’ appointments and sleep with her in her room because of her seizures.
Sophia is still able to be happy, work hard and achieve goals that give her the best life possible, because we are able to choose the best therapies and treatments for her. The proposed Maryland Lifetime Infant Care Trust will stop parents like us from deciding what’s best for our children.
Traditional treatments may not work for everyone, and we didn’t think they would work for Sophia. Sophia had painful muscle contractures, and a local surgeon explained that a traditional tendon release would help treat them. The surgery would cut the muscle in half creating scar tissue and Sophia would have a long, painful recovery. We discovered a different surgery called SPML (selective percutaneous myofascial lengthening) that has a shorter recovery time and is less painful because it makes tiny holes without cutting muscle or creating scar tissue, but only two surgeons in the country do it. After getting the information, the decision was easy — a less painful surgery with a quicker recovery was right for Sophia.
We also wanted to maximize the benefits of this surgery, and we found a center in Los Angeles with different therapies that some providers called “experimental.” The center was founded by a mother whose son suffered brain injury after nearly drowning, so she traveled the world to find the best treatments. She offers all these treatments under one roof, three weeks of intensive therapy for four hours a day. Again, the treatment decision was easy, but now we had to find a way to pay for these “experimental” treatments.
We were able to raise the money through fundraisers, and Sophia has had amazing results. We continue to search for the best treatments for Sophia, even though some doctors think these treatments are too different from what they traditionally see and would be unlikely to recommend them to the the proposed Maryland trust for other children. Because we refuse to give up, Sophia has doctors all over the country who we believe give her the best possible care, so she can have the best possible life. Sophia is not just surviving, she is thriving.
No one knows our kids like we do, but if this law passes, a trust will make decisions about their care. The trust will not recognize their potential or their differences — many of Sophia’s doctors only see her twice a year and can’t possibly know everything about her or what makes her different or special. The trust will not appreciate what different or “experimental” treatments can do for a child. The trust will force parents to choose from limited options, and kids in Maryland with C.P. may not be able to live their best lives.
Sophia, and all kids with C.P., need their parents to be free to choose their care. Every other parent has the right to choose what’s best for their child, and every day is already a fight for parents of kids with C.P.
We give up everything to help our children, and deciding on the right care for our children is a personal choice. Our kids are smart, determined and happy, and the joy they bring us is like nothing you can ever imagine. We fight hard for our kids so everyone understands they are children like yours, but are stuck in a body that is broken.
Albert Einstein wrote, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” Our kids hear and understand and they need us to get them the best care we can — not the care that the trust decides is enough. It’s our job to advocate for our children, be their voice, fight for them, find them the best treatments and give them their best life. The trust will take away parents’ rights to do that. Don’t let the trust limit our children’s rights to have the best lives they can, and our rights as parents to decide what’s best for them.
Vicki Ferguson (firstname.lastname@example.org) is the mother of a special needs child that lives in Maryland.