Parents of newly diagnosed children

If your baby has just recently been diagnosed with CMV, it can be an extremely confusing, difficult time. We've been there! Just trying to understand what the doctors are telling you can leave you feeling lost and alone sometimes. Stop CMV is here to help guide you as you begin this journey, providing information and resources to better understand what comes next. More than that, Stop CMV is about providing connections to other parents who understand what you're going through and can give advice, support, and unconditional love for you and your beautiful child.

If you have a newborn who has been diagnosed with congenital CMV, Stop CMV can connect you with doctors who can provide more information about treatments that may help. For more information, contact treatment@stopcmv.org.

Medical Issues

Are there any treatments that can help my baby?

Yes. Recent studies suggest that CMV hyperimmune globulin (IVIG) treatment may reduce the risk of congenital infection and disease when given to pregnant women experiencing a primary CMV infection. Keep in mind that once the baby has been infected in utero, IVIG treatment is not necessarily effective. However, if a mother has a primary infection and is treated, IVIG treatment can prevent transmission to the baby.

Ganciclovir and Valganciclovir are antiviral treatments that may be beneficial to a newborn with symptomatic congenital CMV. Ganciclovir and Valganciclovir may prevent hearing loss and improve head and brain growth. They can also help combat immediate medical concerns caused by CMV, such as thrombocytopenia (low platelets), organ failure (most commonly spleen and/or liver), hepatitis, and pneumonitis.

If you are a pregnant woman who has been diagnosed with CMV or have a newborn who has been diagnosed with congenital CMV, Stop CMV can connect you with doctors who can provide more information about treatments that may help. For more information, contact treatment@stopcmv.org.

What labs or tests should my baby have in the hospital or after discharge?

At birth, your child should have baseline laboratory tests completed to determine what organs in the body have been affected by CMV, including the following:

• complete blood count
• platelet count
• liver function test
• computerized tomography (CT) brain scan
• eye exam by an ophthalmologist
• hearing test

If any procedures or laboratory results are abnormal, follow up testing should be conducted.

Your child should be supported by a pediatrician or family doctor who understands developmental issues, and who will serve as your child’s primary care provider. As with any newborn, regularly scheduled follow-up visits with the child's pediatrician or family doctor are advised.

According to the CDC, any newborn diagnosed with congenital CMV should have their hearing and vision tested annually, regardless of the outcome of any initial tests at birth. If a child has delayed hearing or vision problems, early detection can help their development.

Because a child with congenital CMV may have special needs, their growth and development should be followed carefully.

Routine immunizations (shots) are recommended for all children born with congenital CMV.

What is the life expectancy for children born with congenital CMV?

Many children born with congenital CMV infection graduate high school, some even college, they have jobs, contribute to their family and society, and can enjoy meaningful relationships as they live to adulthood. Even children born with congenital CMV with severe disabilities and special needs can live to adulthood.

Are all children with congenital CMV affected in the same way?

No. Babies born with congenital CMV infection have widely diverse outcomes, and it is difficult to predict with certainty the future of your child. However, we have provided guidelines to help you understand the present and prepare for the future with your child. They are not all inclusive, because all children are unique individuals, but hopefully you will find them helpful. Click here for more information about long-term outcomes for children born with congenital CMV.

What doctors and specialists will my baby need to see?

With or without the assistance of your pediatrician or child's primary care provider, you may need to assemble a team of specialists to work with your child as issues arise or further examination becomes necessary. Depending on your child's needs, your medical team members may include the following:

Medical Specialties (Highest priority and listed in alphabetical order, not importance)

• Audiology - The evaluation and treatment of hearing related problems that cannot be improved by medication or surgery.
• Infectious Disease - A medical specialty focusing on the diagnosis and treatment for unusual bacterial, viral and communicable diseases, including CMV.
• Neurology - A medical specialty focusing on the treatment of disorders of the brain, spinal cord and nerves in the spine and extremities, including conditions such as strokes and seizures.
• Ophthalmology - A medical specialty focusing on the diagnosis and treatment, including surgery, of diseases and disorders of the eye.

Other Medical Specialties (As needed and listed in alphabetical order, not importance)

• Allergy & Immunology - A medical specialty focusing on the diagnosis and treatment of allergic and immunologic diseases.
• Cardiology - A medical specialty focusing on the diagnosis and treatment of disorders of the heart and major blood vessels.
• Ear, Nose and Throat (ENT) - A medical specialty focusing on the diagnosis, medical or surgical treatment of diseases and disorders of the ear, nose and throat. Also known as Otolaryngology.
• Endocrinology - A medical specialty focusing on the study and treatment of disorders of the endocrine glands which secrete hormones into the bloodstream including diabetes, thyroid and growth disorders.
• Gastroenterology - A medical specialty focusing on the diagnosis and treatment of diseases and disorders of the digestive system including the liver, stomach and intestines.
• Nephrology - A medical specialty focusing on the treatment of kidney diseases and disorders.
• Orthopedic Surgery - A medical specialty focusing on the medical and/or surgical management of injuries to bones or joints.
• Pulmonology - A medical specialty focusing on the diagnosis and treatment of acute and chronic diseases and conditions of the respiratory system.
• Urology - A medical specialty focusing on the diagnosis and medical or surgical treatment of diseases and disorders of the kidneys, bladder, and urinary tract.

Other medical services and specialties include the following:

• Feeding Problems - The evaluation and management of issues related to feeding and swallowing primarily in infants and small children. Services are provided by a multidisciplinary team including physician or nurse practitioner, speech therapist, occupational therapist and nutritional specialist.
• Nutrition Services - Health care professionals who specialize in the study of food and how it works within the body. Evaluation and recommendations can be made regarding weight management and nutritional supplementation.
• Sleep Disorders - A medical specialty focusing on the evaluation, diagnosis and management of sleep related problems including sleep apnea, which is defined as breathing lapses greater than 10 seconds during sleep.
• Orthotics - The specialized field relating to orthopedic appliances, braces and other devices used to support weight, prevent or correct deformities, or align and improve the function of movable parts of the body.
• DME (Durable Medical Equipment) - Items that are primarily used to serve a medical purpose and are generally appropriate for use in the child's home. Equipment ranges from wheelchairs, electric hospital beds to sophisticated oxygen delivering devices, ventilators and enteral feeding systems.

Emotional and Social Issues

How do I cope with all of this?

Being told your child has anything wrong is the hardest thing any parent has to endure. Whether you are pregnant or your child has received this diagnosis at birth will result in various feelings. Your first steps at either point are:

• Stop and gather your feelings and strength. Feelings are never right or wrong. They are yours.
• Guilt is a common one. As much as you might feel responsible, you did not do this to your child. CMV did.
• Your feelings may represent the grieving process (Depression, anger, bargaining, acceptance).
• Research. One of the most difficult things in dealing with CMV is that not all medical personnel have the most up to date information on treatment and outcomes. This will also help you gain a feeling of control. Stop CMV is a great starting point in gathering information, resources, being connected and getting connected. You are and always will be your child's greatest advocate.
• Cry. It is ok in-between being that advocate.
• Ask your questions. Always write down your questions when you think of them so that when you meet with the doctors in their office or in the hospital you have them handy. Feel free to take notes or have someone with you who will.
• Gather a team of doctors that you trust and feel comfortable with. Ask your pediatrician for referrals and ask around. Check with Stop CMV to see if there are other families in your area who can make a referral.
• Support system. Just as important as a good team of doctors will be, so will be your support system. People you can call who will just listen, or take care of other children if need be. People you can vent to. Whether this is family or friends these people are going to be vital in your survival. Stop CMV and CMV listservs are great ways to talk to people who "get it". If need be, look into professional counseling. Having someone who is objective and not emotionally involved can make a difference. Find a support group for special needs parents in your area.
• Take care of yourself, emotionally and physically. Neglecting your own needs will not help your child.
• Ask for help. You are not expected to be able to do it all and you will not be able to.
• Communicate with your spouse or partner. Take care of your relationship.
• Take one day at a time. Some days just getting through the moment will be enough.
• Last, but most important, enjoy your child. It is inevitable to engross yourself in every milestone and worry about every achievement. There will still be those precious moments and successes, unique to your child, but not of any less of value.

What do I tell my family and friends?

Discussing congenital CMV with those closest to you is the best way to rally the support you need to begin the coping process and begin making steps forward to aid in your child’s health and progression. But there's no need to tell everyone at once, so start with those family and friends with whom you feel most comfortable.

Telling others about your child's congenital CMV diagnosis may be the first thing you want to do--or the last. When talking to others about congenital CMV, keep in mind that one size doesn't fit all. Since you may have very different reasons for disclosing to different people in your life, your explanation needs to be tailored to the situation and the particular person. And because no two people are alike, no two responses are likely to be the same.

As you begin to inform your family and friends about your child's CMV diagnosis, you may be confronted with some difficult and distressing questions. The ability to search online for information about CMV also brings a litany of peripheral issues concerning the health and social ramifications of CMV. Click here to read "Other Transmission Questions" for more information about CMV transmission in various populations.

Is my baby a danger to anyone?

No. Most children born with congenital CMV will shed the virus through the toddler and preschool age. It is not necessary to determine if a child still has the active virus because it does not appear to influence or predict problems. Additionally, children born with congenital CMV pose no threat to their peers and no more of a threat to those at risk for CMV infection (ie. pregnant women) than would any other child.

CMV is a very common virus in healthy young children, not just those who are born with congenital CMV. It is estimated that up to 70 percent of healthy children between 1 and 3 years of age may have CMV. Healthy children who get CMV from their peers will not experience the same outcome as those children infected during pregnancy; they will not become deaf, disabled, and will not suffer long-term medical effects from their exposure to CMV.

Daycares, preschools, schools, therapists, churches, and community members should not require a child to be tested for CMV shedding before being accepted into a program. Screening of children for CMV infection is not recommended, and infected children should not be excluded from school or other settings. No one should not discriminate against a child born with congenital CMV.

Standard hygiene practices are advised for all persons caring for children. Click here for more information about preventative measures to protect against CMV.

Can I talk to other parents and families who have been through this?

Being told that your child has congenital CMV is difficult and stressful. Please know that you are not alone and that there is a community of parents around the world ready to support you on your new journey. They understand what you are going through and are full of support and knowledge. If you have questions on a particular issue your child is dealing with, Stop CMV can help you connect with another parent who has dealt with similar issues. Be sure to visit the Stop CMV Fanpage on Facebook. You can ask questions, participate in the daily discussions, and "meet" other families dealing with similar issues.

Practical and Tactical Issues

Can I get Early Intervention Services for my child?

Yes, and experts recommend enrolling children born with congenital CMV into early intervention services as soon as possible. Until the age of 3, children qualify for early intervention programs either with professionals who provide services in the home or in program centers. Check with your child's pediatrician, social worker, or Stop CMV to learn what resources are available in your area and to obtain a referral. You can also call your local Early Intervention Agency to self-refer your child for an evaluation and services. In most states, Early Intervention is provided by the Department of Health.

Therapy Services

Physical Therapists, Occupational Therapists, and Speech and Language Therapists may be working with your child and should be communicating frequently. Participate in any training and be part of the team. Your participation in team training is vital so that you can increase your skills to successfully parent your child and understand the goals and techniques of his or her program. Knowing the techniques and objectives of your child's intervention program will allow you to closely monitor his or her progress and guide and evaluate the members of your team. Therapy specialties include the following:

• PT (Physical Therapy) - The treatment in the delay in development of the function or use of large muscle skills such as in the legs and arms. Focus of treatment is in development and strengthening of large muscle groups generally used in walking and lifting.
• OT (Occupational Therapy) - The treatment of a delay in development of fine motor skills such as small muscle groups in hands. Focus of treatment is in development or strengthening muscle groups to teach or improve skills related to activities of daily living such as feeding, bathing and dressing.
• ST (Speech Therapy) - The treatment of a delay in speech development including articulation, fluency, resonance or expression.

What other services and benefits is my child eligible for?

Educational Services

When your child turns 3 years old, he or she is guaranteed educational services under the Individuals with Disabilities Education Act (IDEA). Under IDEA, local school districts must provide "a free appropriate education in the least restrictive environment" and an individualized education plan (IEP) for each child. IDEA also guarantees that a child with special needs has access to speech, occupational, and physical therapy services.

Federal/State Services

• Supplemental Security Income (SSI) is a federally funded program that sends monthly checks to children who the federal government determines to be disabled. When you apply for SSI, you will be asked for detailed information about your child’s medical condition and how it affects his or her ability to function on a daily basis. Check with your local Social Security office or your state or county social services office for more information on SSI programs... more info
• Medicaid is a federally funded program that can extend medical benefits to disabled children who meet the eligibility criteria. In most states, children who get SSI payments qualify for Medicaid. In many states, Medicaid comes automatically with SSI eligibility. Some children can get Medicaid coverage even if they do not qualify for SSI through Medicaid Waiver programs. Check with your state Medicaid agency or your state or county social services office for more information on Medicaid programs... more info
• Respite care provides parents, families, and caregivers with occasional relief from the daily care of their child. For parents of children born with congenital CMV, respite care can provide the time to restore depleted inner resources and enable them to continue giving the care. Contact your social worker for more information about respite care services in your area.

What else do I need to know moving forward?

As the parent of a child with congenital CMV, you will interface with many systems: doctor's offices, insurance companies, clinics, teachers, therapists, relatives, and friends. Armed with your knowledge of your child, and of congenital CMV in general, you will become your child's best advocate. This will often involve educating others who just don't understand. This may sometimes be a burden, but try to remember: what you teach someone about congenital CMV is something that will help not only your child but will raise awareness of CMV and congenital CMV to those in a position to teach and help others.

Keeping yourself organized will reduce your stress and increase your ability to advocate for your child. Start keeping files to organize any medical paperwork that may have piled up. You may need to create a separate binder to keep track of insurance claims. Make sure to keep thorough records of test results, medical issues, and lab results. Creating a weekly schedule for your child's medical and therapy visits will not only help you remember appointments, but will also help you better manage your other responsibilities.