Receiving a cerebral palsy diagnosis for your child can be an overwhelming experience that few parents are prepared to navigate. Along with the physical and emotional struggles, parents must learn to navigate their child’s medical needs, as well as the financial burden that accompanies those needs. And the sooner this begins, the better. This article serves as a starting place for parents.

1) Understand Your Child’s Diagnosis and Milestones

Once your child has been diagnosed, it is important to ask questions about your child’s diagnosis and expected development. Remember that there are no silly questions and it is important that you take the time to understand your child’s needs. Many parents find it helpful to take notes in a notebook or note-taking app, or even record the visit to refer to later.

Questions for Your Doctor

1. What types of damage or injuries did my child suffer? How will this affect development?
2. What symptoms can I expect to see in my child? Will they worsen as he/she gets older?
3. Discuss targets and milestones for your child’s unique growth and development.
4. Are there any treatments that can improve my child’s condition?
5. What was the cause of the CP in my child?
6. What actions were taken by medical staff and doctors to identify risks and prevent injury?

Learn more about developmental milestones and take the Milestone Quiz.

2) Commit to Early Intervention

A CP diagnosis may take 1–5 years, but most children can be diagnosed by 18–24 months¹. That age is falling as several US hospitals improve diagnosis methods and reduce the average age of diagnosis to just 9.5 months². By diagnosing CP early, the child’s opportunity for early intervention is improved which can have a significant effect on growth and development.

There are many ways in which early intervention can help produce a better long-term outcome for children with CP. Earlier physical therapies can help train muscles and early speech therapies can help keep your child on-track with their milestones. The longer a child goes without treatment may mean more difficult progress in the future.

The concept of family coaching is a relatively new technique that has shown significant success in children with CP. In this style of early intervention, families set the goals and a coach provides – by means of an open dialog – hints and suggestions on how the goals may be achieved during daily routines, such as feeding and bathing. A recent study showed very promising results with families that set goals and consistently supported their child to achieve those goals while at home¹.

There are many types of treatments and therapies available and you should consult your doctor to determine the best treatment plan for your child’s unique needs.

Learn more about available treatments and therapies available for your child.

3) Know Your Rights

While CP is often unpreventable as a result of a developmental injury or infection, parents may be surprised to learn that their child’s CP may have actually been the result of a medical error before, during, or shortly after birth. If you suspect negligent or improper care from a medical professional may have led to your child’s CP, it’s important to take the necessary steps to learn more and, potentially, seek compensation from the medical institution. This compensation can make a tremendous difference in helping ensure the best care for your child for life.

While we don’t know how often cerebral palsy is caused by medical negligence, studies have shown that up to 23% of babies who develop cerebral palsy do so because of prolonged periods of inadequate oxygenation during labor and delivery. The following are some important questions to help determine the cause of your child’s CP³:

Questions about Your Newborn

1. What was the condition of your child at birth (breathing, crying, moving…or limp and needing resuscitation)?
2. Did your child have an extended hospital stay after birth?
3. If so, was your child in the Neonatal Intensive Care Unit (NICU)?
4. Did your child have an abnormal ultrasound, CT-scan, or MRI of the brain?
5. Did your child experience seizures during the first few days of life?
6. Has your child been diagnosed with cerebral palsy or brain damage?
7. Do you have copies of your child’s medical records?

5 Questions about Labor and Delivery

1. Did electronic or other fetal monitoring reveal abnormalities in the baby’s heart rate, or did some other event occur that signaled the baby was in distress?
2. Did the mother experience any vaginal bleeding at any time, or unusual pain in between contractions?
3. During labor and delivery, were substantial and repeated measures taken to improve fetal oxygenation such as oxygenating the mother, turning her on her side, or giving her IV fluids; or were drugs administered to slow or calm contractions?
4. Was an emergency cesarean section or an assisted vaginal delivery (with a vacuum extractor or forceps) required?
5. When parents asked questions about labor and delivery complications, were they sidestepped or stonewalled, or were health care providers forthright with information?

Note: It may be difficult to determine if medical error caused the injury, as doctors may not offer the information willingly. You have the right to see you and your child’s medical records. You may also want to seek the counsel of an attorney to help you obtain and interpret your records.

Sources
Frontiers in Neurology, Early Diagnosis and Early Intervention in Cerebral Palsy
Earlier Cerebral Palsy Diagnosis Improves Quality of Life
Was My Child’s CP Preventable? 12 Questions to Ask