We cannot stress how important it is to protect the delicate lungs of babies born with Congenital Diaphragmatic Hernia during the cold, flu and RSV season (as well as many other viruses). We have lost toddlers who survived CDH only to catch RSV at up to 4 years old.
Every year, we lose 3 or 4 members to this horrible virus.
We beg you to vigilantly protect your child as much as you can.
If you can, press your doctor and insurance for the RSV shot. And please shelter your babies during the virus season as much as possible. RSV is transmitted by (usually healthy) people through what may look like just a cold or no symptoms at all.In newborns, the elderly, those with lung issues or who are immuno-suppressed… RSV can be deadly. It takes the lives of many otherwise healthy people every year.
From the CDC: RSV-associated deaths among children <5 years of age are thought to be uncommon, estimated at 100-500 per year. Among US adults, an estimated 177,000 hospitalizations and 14,000 deaths associated with RSV infections occur annually.”
If your insurance will not cover Synagis but you have a prescription from your child’s doctor, you can call contact SOBI through the contact info here. AstroZeneca sold the rights to Synagis earlier this year so there is a new process.
https://www.synagis.com/hcp/synagis-cost-info-for-patients.html
Unfortunately, because there is not currently a standard of care for CDH in the US, many insurance companies will deny Syngais past the first year or 2. You can contact the company directly for assistance.
If you do not believe in vaccinations or cannot vaccinate for other medical reasons, you can take precautions against RSV by:
- Avoiding Crowds (school, church, shopping, etc)
- Limit visitors during virus season
- Wash your hands when entering your home
- Wash doorknobs, sink knobs, all common areas thoroughly and often
- Do not allow anyone to kiss your child
- Restrict people who have a fever, cough or sniffle away from your child
- Face masks or light blankets over strollers or carriers over your child if in a crowd
- If your child has older siblings, ask their teacher to alert you if any children in class are sick
- Ask their teacher to pass on a note to other parents from you explaining CDH, the risk to your child if their child brings a virus to school and your contact information to alert you
- Have a sitter available to take care of any sick siblings in their home instead of yours or ask them to keep your cherub until your house is virus free
- If you must make a trip to the doctor, hospital or ER, ask to be seated away from crowds
- Always have your child’s medical information and doctor contact info at hand
- Get a recent baseline chest x-ray if you haven’t had one in the past 6 months and your child is under 5 years old
- Always, always call the doctor if you have any concerns
- Always listen to your intuition. If something feels off, it usually ill.
