The birth of a child is one of life’s most cherished moments for the parents, grandparents, uncles, aunts and friends. Photos with specific birth details like weight, height and name are expected and highly anticipated. Most likely they are posted on social media sites so that family, friends and even distant acquaintances can share in the joy.
Sometimes the joy of the birth is overshadowed by a doctor’s announcement that the child has a disease, disorder or birth injury. The expected plan of taking the little one home after a routine hospital stay is suddenly changed. Doctors and nurses may not be completely sure what the problem or issue may be.
The words “cerebral palsy” or “CP” may be used. For some parents, it’s their first time hearing those words or they may know someone who has CP. Either way, the words are unfamiliar and the disorder is not understood.
Parents with a child with a new diagnosis of CP are thrust into unknown territory. Here are a few answers to questions that may be running through their heads:
What is cerebral palsy?
Cerebral Palsy (CP) is the result of a brain injury or brain malformation that happened while the brain is developing. This can happen before, during, or after birth. Brain development, muscle control, muscle coordination, muscle tone, reflex, posture and balance can all be affected by the damage.
This means that talking, walking and everyday activities may be affected by CP. Each person who has CP is affected differently. CP could present as a slight limp or a speech impediment and a person can function independently with a few accommodations. More serious CP can mean around-the-clock care, special education classes, on-going therapy and doctor’s care.
Getting the news that the new baby has cerebral palsy is overwhelming. Parents are typically unprepared to hear the news and may not know where to start or what to do. Parents may feel sad, distressed and confused. That’s all normal.
When parents are ready to act, here are a few things they can do:
- Accept help from family and friends.
- Find a local support group like UCP, Kids Together or PEAL.
- Set up an appointment with a state-run agency, such as the Pennsylvania’s Early Intervention Services through the Department of Human Services, to have your child evaluated.
- Start a notebook to track milestones and growth, document appointments, discussions with doctors, therapists and insurance companies.
- Accept the role of an advocate. Find out about every resource that is available to your child.
- Ask the doctors questions about how the CP occurred and what treatments are next.
How can parents address questions from family and friends?
It’s expected that family and friends will be concerned about the new child. They were excited to hear the news of the arrival of a new baby, but now they are worried, too. They may ask questions that parents don’t have the answers to or are not ready to answer. Parents may need time and space while they determine what’s happening with their new baby and what information they want to share.
Some questions may seem nosey or intrusive. Some of those questions come from a place of worry and concern, while others may not. It is the parent’s job to insulate their family and new baby from extra burdens and unneeded pressures. Weed out the people who truly want to help from the people who just want news to spread.
It’s okay to ask family and friends to send good thoughts and prayers. If new parents are comfortable with offers of help, then put family and friends to work. Ask them to bring meals, run errands or attend doctor’s visits. Simple jobs around the house fall by the wayside when all concern is on a child with special needs. Some parents even set up a “chore jar” with simple things to do to help out – like wipe down the counters, take out the trash or make a grocery list.
The most important thing is for parents to be able to love their new baby as they process what is happening and how best to proceed. If family and friends get in the way, it’s best to be clear about what the family needs at the moment.
What does the future look like for a child with CP?
Along with the birth of a new baby comes the hopes and dreams of parents. While the baby is still in utero, mothers and fathers dream about what they will do with their child. If the parents enjoy camping and hiking, they know they want to develop the child’s love of the outdoors. If the parents are musical, they may picture their child at their first performance, years before it’s even a possibility. The future seems magical, filled with possibilities.
When parents receive the news that their new child has cerebral palsy, all hope may be shattered because there are so many unknowns. It is even normal to focus on what a child with CP can’t do or won’t do. Everything seems impossible.
It is true, life will be different than expected. The future may include long-term speech language therapy, physical therapy and occupational therapy. It is not uncommon to have regular visits to specialists for orthotic braces, hearing and eye checks and neurological testing. Depending on the severity of the cerebral palsy, medication, surgery and other specialty areas may be needed.
Fortunately, we live in a time where children with special needs have incredible opportunities to attend summer camp, hike on accessible trails, visit specially built amusement parks and go to school with typically developing peers. Therapy may include art, water or music, horses and gardening. The possibilities are endless.
If parents focus on the can and will, they will find great opportunities for their child to live a happy and fulfilling life.
Is it your fault that your child has CP?
It’s natural for parents to feel a range of emotions when they are told that their child has CP. They may feel guilty because they blame themselves for their child’s CP. Thoughts like, “If I had done something different, then my child would be healthy” or “If I hadn’t done that, then my child would not have cerebral palsy” cross the minds of parents.
Most likely the cerebral palsy was not caused by something a parent did or did not do. There are several causes of cerebral palsy. CP can be caused by abnormal brain development, injury or disease. For some parents, it’s important to find out the source of the cerebral palsy to better understand what they are dealing with and also to bring them peace of mind for the birth of future children.
If you do think it was caused my medical negligence or a medical mistake, then it’s important to find out how it happened.
In many cases, a medical error occurred during the birth process that damaged specific areas of the child’s brain that control motor functions. If you suspect that your child’s cerebral palsy may have been cause by medical error, you should contact Ross Feller Casey’s experienced cerebral palsy lawyers now for a free case evaluation.