Your child has been diagnosed with brain damage. That’s a scary thing. You’re probably worried and scared and wondering what’s going to happen. Every child is different, as is every brain injury, so there’s no single answer to those questions. This guide is designed to give you a general idea of what to expect along the way.
Early Diagnosis and Treatment
Some types of brain injuries, usually those caused by stroke or physical trauma during birth, will require treatment immediately after delivery. That means your baby may be taken for testing right away. Your doctor may order an MRI or a CT scan to look for damage. Depending on the results of those scans, they may take the baby to the ICU or to surgery.
Your little one may need medication to prevent blood clots and swelling or to treat an infection. Surgery may be required to relieve swelling and pressure or to repair damaged blood vessels and remove clots. Your doctors and nurses should keep you informed of any testing and results. They’ll let you know if surgery is necessary to save the baby’s life or prevent further brain damage.
If your baby needs brain surgery, expect a lengthy hospital stay. The surgery itself is dangerous and difficult and they’ll need to monitor your baby closely afterward. Your little one may also need to stay in the hospital for a while to receive treatment for a blood disorder, infection, or other cause of brain damage. In any case, your child will need constant medical monitoring for at least a few days to ensure that the cause of the damage has been cured or removed and that the damage isn’t getting worse.
Infancy And Early Childhood
If your child has severe brain damage, treatment will likely start early. This may include medication for seizure disorders and other secondary effects as well as physical therapy to maintain joint flexibility, strengthen muscles, and improve balance and coordination. Severe brain damage often causes developmental delays, so your child may be late to sit up, crawl, walk, and talk. Some children will never learn to do those things and will always need help performing basic tasks.
If the damage is not severe, you may not even know that your child has suffered brain damage. Children with brain damage may have mood and behavioral troubles, but these can be difficult to distinguish from ordinary childhood behaviors.
If your child has severe brain damage, you’ll need to decide which educational option is best for your family. Public schools are required by law to provide accommodation for all students, even those with severe physical and mental disabilities. Depending on your means and where you live, you may also have access to private institutions that specialize in education and care for the severely disabled.
Wherever you decide to send your little one to school, make sure to share complete medical information with the school nurse or medical staff. That includes any diagnosed behavioral or psychiatric disorders as well as physical disabilities. Make sure to provide a complete schedule of any required medications. If your child has a regular schedule of therapy, you’ll need to work with the teacher and school administration to determine how best to keep that schedule.
You should also make an appointment to discuss your child’s specific needs with the teacher. Inform the teacher of any health problems such as epilepsy that may require treatment during the school day and of any physical disabilities. If your child is extremely sensitive, you may want to make a list of any behaviors or objects that may trigger emotional upset – for example, your child may be upset by a specific color or sound – so the teacher is aware and can avoid potential issues.
You may not even be aware that your child has suffered brain damage until school starts. At that point, a teacher or school counselor may notice learning or intellectual disabilities or behavioral problems. You’ll likely want to get an opinion from an outside psychiatrist, learning specialist, or doctor about what may be causing the issue. Brain damage is particularly difficult to diagnose and intellectual and behavioral disorders can have a number of different causes, so you may never get a concrete diagnosis of the underlying cause.
If your child is diagnosed with a learning disability or behavioral problem, you may choose to work with the school or with a private doctor or therapist to create a treatment plan. That may involve therapy or medication. Remember that public schools are required by law to provide facilities for all students, so your child may be entitled to special education classes and teachers. You may also choose a private school with the appropriate facilities.
Children with mild learning or behavioral issues typically respond well to treatment and will be able to succeed in school and beyond.
The Long Term
The long-term prognosis for children with brain damage depends on the severity of the case. Children with very severe brain damage may never be independent; some children may never be able to walk or talk. The less severe the damage, the higher the likelihood that your child will be able to live independently. Your child may always need medication and therapy to manage the consequences of brain damage.
Children with mild damage may hardly be affected in the long term. With appropriate therapy and support, they can overcome minor disabilities and will need no treatment or support in the long term.
The bottom line is that each case will be different. The best thing you can do for your little one is provide all the love and support you can – that’s true no matter what health problems arise.
Raising a child with any type of disability can be expensive and frustrating. The good news is that you don’t have to do it alone. Check out some of the resources below for help raising a child with brain damage.
Medicare and Medicaid
If you can’t afford health insurance, Medicare and Medicaid can help you get the health care your child needs.
State Disability Services
Each state has an office dedicated to providing needed support services to children with disabilities. These offices can help you find medical care, housing, medical devices, prescriptions, and more. You can find your local office on your state’s official website.
Your child may be entitled to Social Security Disability benefits. These payments can help you cover the cost of your child’s health care and other needs.
The UHCCF provides financial assistance to families when health insurance doesn’t cover the full cost of care. Your family may receive up to $5,000 each year to cover medical care for your child.
Children with brain damage may need medications for a variety of reasons and sometimes those drugs are not covered by insurance. That’s where the Partnership for Prescription Assistance Programs comes in. It provides access to low- and no-cost medications for patients in need.
NeedyMeds is another resource to help you afford the medications your child needs. It’s a discount card that can cut the costs of prescriptions by up to 80%.
Disabled people are entitled to health care, appropriate educational programs, and more. The NDRN helps disabled people fight to make sure their rights are honored.
Online communities for the families of children with brain damage can provide emotional support and parenting tips. Sometimes it just helps to know someone else is going through the same things you are.
There are many more resources available than those we’ve listed here. Search online or talk to your child’s doctor about resources in your area for your child’s specific needs.