Understanding Moebius Syndrome

For Parents & Caregivers of the Newly Diagnosed

There are no words to describe the initial feelings of finding out your child has Moebius syndrome. It can feel very overwhelming and lonely after giving birth to a child with medically complex needs. It’s invaluable to find a group of people who can relate to what you are going through and offer advice and support. The Moebius Syndrome Foundation can help you connect with other parents and understand the complexities of Moebius syndrome, while providing scientific research updates on Moebius syndrome. 

Begin by requesting an information packet and navigating through a diagnosis.

Download our welcome booklet and check out the resources below. 

Emotionally Processing a Diagnosis

The early days of a diagnosis can be challenging. You were probably expecting to have a short hospital stay and bring your baby home to welcoming family and friends. Now, you are facing a diagnosis that you’ve likely never heard of, and you are thrown into having to both explain it to others while navigating it yourself. This time can be full of emotion. You may experience grief, denial, and/or shame before reaching acceptance. It’s important to know that your feelings are valid and it can take time to come to terms with everything. 

You may want to read more about “Feeling Different About A Baby With A Difference.”

It is very difficult to enter such unknown territory. You will experience all kinds of emotions and you may feel very alone. With a rare condition, it is difficult to find others who truly understand what you are feeling. You may want to speak with a professional therapists or counselor. You can also find support through our Facebook groups, which include a Moms & Dads group, and our events.

Financial Planning

The financial strain of having a child with complex medical needs is real. Families should plan for additional medical expenses, hired caregivers or nurses, and for one or both parents to adjust their working hours. A parent or guardian must accompany the child to numerous appointments and therapies, which can add up to several hours per week. Often, a parent will be put in a position of choosing between having a career or caregiving for their child. The amount of time off from work depends on the child’s medical situation and may be temporary or lifelong. Moebius syndrome presents differently in each individual, and some individuals may have more complex diagnoses than others. 

U.S. residents may want to inquire at the hospital or the pediatrician’s office about qualifying for Medicaid or Social Security benefits for their child. Programs vary by state. A social worker can guide you through the application process.

Health Insurance Premium Payment (HIPP) programs are offered by some states. These programs help cover monthly healthcare costs. Google “HIPP” or “premium assistance programs” and the name of your state to find the forms online.

Moebius Syndrome Foundation board member Rebecca Maher and her daughter, Jessica, discuss their experience with Jessica’s diagnosis with Moebius syndrome and how discovering the Moebius Syndrome Foundation changed their lives.

Balancing Caregiving and Hiring Help

Having a child with a disability can be overwhelming at times. Like any parent, mental health breaks from child care needs are a reality for caregivers. 

Duties for caregiving should not fall solely on one person. Both parents should learn how to care for a medically complex child and be able to meet their child’s needs. This ensures the child’s safety, but also allows for duties to be transferred between partners to prevent overburden on one caregiver. 

Don’t be afraid to hire help. Medically complex children may need nursing staff. Some states in the U.S. will provide a nurse. Ask your hospital social worker for more information. 

Professional nannies and well-trained babysitters may also provide relief. Professional nannies can help transport children to various therapy appointments, administer eye drops, and assist on long medical trips. Babysitters can provide several hours of relief for parents to nap, do chores, or go on a date. You may also want to consider hiring a house cleaning, lawn care, or snow removal service to help ease other everyday burdens of maintaining a home. 

Advocating for Your Child

Advocating for your child through the medical system is crucial. Someone will need to keep track of the various appointments, medical notes, and homework assignments provided by therapists. Using a binder can help you organize all the information.

Don’t be afraid to get second opinions. You will likely become your child’s expert on Moebius syndrome and will, at times, need to educate providers. 

It’s OK to ask a lot of questions and ask for clarification on things you don’t understand. Medical jargon can be confusing and overwhelming. Write down your questions in your binder as you think of them, and then you can ask them when you are in the appointment. 

It’s important to understand there are three models of viewing disability. The healthcare system will work within the medical model. 

You and your family members may also want to advocate for your child outside of medical appointments, by raising awareness of Moebius syndrome and volunteering or fundraising. Contact us for more information.