Parent prenatal questions
First off, congratulations and welcome!
In this article, we will go over common parent prenatal questions we’ve found commonly associated with Edwards’ Syndrome in our community.
Edwards’ Syndrome is a chromosomal condition that affects many parts of the body. It occurs when there is an extra copy of the 18th chromosome. This results in developmental delays, as well as various physical abnormalities that can be mild to life-threatening.
Additionally, we have put together some questions that you may want to ask your team.
– What is the expected lifespan of a child with Edwards’ Syndrome?
– What are the treatment options for the various medical concerns associated with ES?
Please keep in mind, that ES is a spectrum, so each child is unique and may have different concerns.
That being said, some common health concerns may need to be addressed for children with ES, including heart defects, feeding difficulties, and respiratory issues.
The list below is not inclusive of all possible health concerns.
Here are some common health concerns that you may want to discuss with your medical team:
– Heart defects and related issues
– Gastrointestinal concerns
– Respiratory concerns
– Mobility difficulties
– Feeding difficulties
– Dental and oral issues
You must follow the guidance of your medical team for all medical advice. Make sure you’re using all your resources to create a comprehensive approach toward your child’s diagnosis and next steps, including having a supportive medical team that aligns with your family’s goals for your baby.
Remember to take care of yourself as well as your child, and don’t be afraid to ask for help or support from friends, family, or a therapist if needed.
Questions to ask your team:
- Have they cared for and treated other Trisomy 18 babies?
- How frequently will they do ultrasounds?
- Will they suggest a C-section or a vaginal delivery?
- Under what circumstances would they induce or request a c-section early?
- Will they consider steroid shots if there is a chance the baby will be delivered early?
- How will the hospital/team handle the possibility of surgeries, such as heart surgery?
- How will the hospital/team handle interventions right at delivery, for example, intubation or other life-saving measures?
- Will they take the baby to the NICU immediately?
- Even if no heart defects are on the anatomy scan, will they have a pediatric cardiologist complete a fetal echocardiogram?
It is important for you to establish a care plan and to ensure both your family and the medical team are on the same page. Asking the right questions can help get the process started.