Receiving an unexpected prenatal diagnosis can be challenging to handle. Expectant parents can experience a range of emotions. Questions and concerns may fill your minds at a rapid pace. First thing first, take a deep breath and exhale. We are here for you! Below you will find answers to the most frequently asked questions about hydrocephalus in pregnancy and a checklist to help make this journey a little easier.
Frequently Asked Questions
Q. Could I/we have prevented hydrocephalus?
A. It is important to understand that hydrocephalus is a neurological condition, not a disease. Hydrocephalus that is present at birth is referred to as congenital hydrocephalus. Congenital hydrocephalus is caused by a complex interaction of genetic and environmental factors during fetal development. Parents must not blame themselves for their child’s condition. The circumstances contributing to a child’s hydrocephalus are beyond the parents’ control.
Q. The specialist suggested termination, what should I/we do?
A. Because a prenatal diagnosis of hydrocephalus can be complex, it is essential that you learn as much as possible about your child’s particular case so that you can make informed decisions. Establishing a strong relationship with the healthcare team, accepting that there may be unknowns about the severity of your child’s hydrocephalus, and educating yourself and your family about hydrocephalus, in general, can help to alleviate your fears.
Q. What happens after birth?
A. Your baby may need to undergo treatment quickly after birth. The extra cerebrospinal fluid (CSF) may need to be diverted with a shunt or withdrawn from a reservoir. The most common treatment for hydrocephalus is a medical device called a shunt, a flexible tube that is placed in the ventricular system of the brain and connected to a valve. Establishing a relationship with a pediatric neurosurgeon as early as possible is critical. The pediatric neurosurgeon can provide you with details and the best treatment option for your child.
Checklist for Parents
- If a baby has hydrocephalus they will be delivered at or referred to a Children’s Hospital so they can be cared for by a pediatric neurosurgeon and healthcare team. These Children’s Hospitals have multidisciplinary teams that meet with parents prenatally if hydrocephalus is diagnosed. The team has lots of resources and should make appropriate referrals within the hospital system so the parents aren’t unduly burdened. Therefore, the first thing to do if you have received a diagnosis of prenatal hydrocephalus is to meet with a multidisciplinary healthcare team at a nearby children’s hospital so you can have your questions answered and know what to expect. If you need help finding a pediatric neurosurgeon nearby, you can search the Hydrocephalus Association (HA) Physician’s Directory and schedule an appointment as soon as you receive the diagnosis. A skilled pediatric neurosurgeon will be an integral member of your child’s healthcare team, following your child’s development for many years to come.
- Develop a plan with the pediatric neurosurgeon for the best treatment method, a shunt or Endoscopic Third Ventriculostomy (ETV).
- Ask if your neurosurgeon can recommend a pediatrician they like to work with and make an appointment with that doctor as soon as you can so that you can get on their radar and create a plan in conjunction with your neurosurgeon.
- Ask your doctor if a pediatric neurologist will need to be a part of your child’s care and if there is someone they can refer you to. If you are unable to identify a neurologist nearby, you can search through HA’s Physician Directory.
- Reach out to the Hydrocephalus Association’s Community Networks and Peer Support Program, HydrocephalusCONNECT, for support and discussion. They can’t give you medical advice, but these people have been in a similar situation and can identify with your feelings. Sometimes just to talk through your feelings can be helpful.
- Use the Hydrocephalus Association’s website to find educational resources, videos, and images to help you explain what hydrocephalus is to your immediate and extended family members.
- Research your State’s Early Intervention Program Services. Your child may be entitled to therapists to visit your home and observe your child’s development milestones and provide therapies to help your child thrive.
- If applicable, develop caregiver plans for your other children for when your baby is born – if there is extended family or friends that you can ask to take care of them, it would be helpful when your child is born.
- Prepare and educate your other children by talking about hydrocephalus, using the Hydrocephalus Association’s website and other resources for help. If your child has Child Life Specialists or an Advanced Practice Nurse, they can speak with siblings about the condition as well.
- Reach out to your insurance company to discuss the diagnosis, and see if there will be any issues with coverage. It is important to check if your doctor is in-network.
This article was written by HA volunteer, Rhea Flanagan, and has been reviewed by members of our Medical Advisory Board and other professionals in the field.