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Preventive Healthcare: My Premature Son’s Fight Against RSV

By EmpowHER October 29, 2013 - 2:30pm
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Sponsored by: Synagis

By: Dawn Boylard, Clinical Nurse Specialist

If you’ve never heard of RSV, I hope that you continue reading my story and tell others about this common, yet potentially serious virus. While I’m a neonatal nurse who fights for sick babies every day, I’m especially passionate about raising awareness of respiratory syncytial virus (RSV), three letters that forever changed my life.

RSV is a common, seasonal virus that can cause mild symptoms often mimicking the common cold or flu.1 While the virus affects nearly 100 percent of babies before the age of two, premature babies are at increased risk for developing severe RSV disease.2, 3

There are an alarming number of preterm births in the US, with approximately half a million babies born prematurely each year.4 Because preemies are not fully developed at birth, many—even those born just a few weeks early—have unique health needs, often requiring specialized medical attention. For example, preemies have underdeveloped lungs and a lesser amount of antibodies, so they are not as well-equipped as full-term babies to fight off common viruses, such as RSV.5,6

I adopted my son, Tyler, who was born at 31 weeks gestational age, when he was four years old. Tyler was born premature and had multiple additional risk factors for severe RSV disease including young siblings, a crowded living environment and exposure to tobacco smoke (his birth mother smoked). Since Tyler “looked healthy,” he was not prescribed Synagis® (palivizumab), a series of monthly injections, which would help prevent severe RSV disease during the winter season in his first year of life.7 Common side effects of Synagis include fever and rash. Other possible side effects include skin reactions around the area where the shot was given (like redness, swelling, warmth, or discomfort).

Tyler contracted RSV for the first time two weeks after leaving the hospital after birth and developed a severe infection, causing him to be hospitalized for two months. Although Synagis is not approved to treat severe RSV disease, Tyler’s birth parents and doctors applied for the medication to help prevent RSV, but he was denied insurance coverage. While Tyler’s birth parents and doctors were appealing the denial, Tyler contracted RSV again.

RSV disease symptoms can be hard to distinguish from other common seasonal ailments, so it’s important for parents to seek medical care before the infection becomes very serious. Signs and symptoms of RSV disease that parents should not ignore include persistent coughing or wheezing; rapid, difficult breathing, or gasping breaths; blue color on the lips, mouth, or fingernails; and fever.8,9

Tyler’s condition was severe. Over a two month period, Tyler required significant and costly inpatient treatment at the hospital. While Tyler survived his first year, sadly, he was put into foster care at 18 months because his family was financially no longer able to care for him. That’s when I met Tyler and fell in love. My husband and I made the decision to adopt Tyler, as we were able to appropriately care for him.

I’m telling you the same thing I tell parents every day in the NICU—be an advocate for your child and never stop fighting to ensure they receive the appropriate medical care they require. All parents must educate themselves to ensure they are making the best decisions regarding their children’s health.

Since there is no specific treatment for severe RSV disease, prevention is crucial.10

To help protect your baby from severe RSV disease, you should:

  • Understand the risk factors and ask your child’s pediatrician if your child may be at increased risk—if your child is at high risk, ask if he/she may be eligible for Synagis this RSV season.
  • Help prevent the spread of the virus by frequently washing your baby’s hands, toys, and bedding, and by keeping your baby away from large crowds, young children, and people with colds.11 Anyone who touches the baby should also wash their hands before doing so.
  • Carefully monitor your baby’s behavior for warning signs like a persistent cough or wheezing; difficulty breathing or rapid, gasping breaths; blue color of the lips, mouth, and/or fingernails; difficulty feeding; fatigue; and fever.8,9



To learn more about severe RSV disease and if your child may be eligible for Synagis, visit www.Synagis.com.

Important Safety Information

What is Synagis® (palivizumab)?
Synagis is a prescription medication that is used to help prevent a serious lung disease caused by respiratory syncytial virus (RSV) in children at high risk for severe lung disease from RSV.

Who should not receive Synagis?
Children should not receive Synagis if they have ever had a severe allergic reaction to it. Signs and symptoms of a severe allergic reaction could include itchy rash; swelling of the face; difficulty swallowing; difficulty breathing; bluish color of the skin; muscle weakness or floppiness; a drop in blood pressure; and/or unresponsiveness. If your child has any of these signs or symptoms of a severe allergic reaction after getting Synagis, be sure to tell your child’s healthcare provider or get medical help right away.

How is Synagis given?
Synagis is given as a shot, usually in the thigh muscle, each month during the RSV season. Your child should receive their first Synagis shot before the RSV season starts, to help protect them before RSV becomes active. When RSV is most active, your child will need to receive Synagis shots every 28-30 days to help protect them from severe RSV disease for about a month. Your child should continue to receive monthly shots of Synagis until the end of RSV season. Your child may still get severe RSV disease after receiving Synagis. If your child has an RSV infection, they should continue to get their monthly shots throughout the RSV season to help prevent severe disease from new RSV infections.

The effectiveness of Synagis shots given less than monthly throughout the RSV season has not been established.

What are the side effects with Synagis?
Possible, serious side effects include severe allergic reaction, which may occur after any dose of Synagis. Such reactions may be life-threatening or cause death. Unusual bruising and/or groups of tiny red spots on the skin have also been reported.

Common side effects of Synagis include fever and rash. Other possible side effects include skin reactions around the area where the shot was given (like redness, swelling, warmth, or discomfort).

Please see accompanying full product information, including patient information.

1 American Academy of Pediatrics. Respiratory Syncytial Virus. In: Red Book: 2012 Report of the Committee on Infectious Diseases. Pickering LK, ed. 29th ed. Elk Grove Village, IL: American Academy of Pediatrics; 2012.

2 Glezen WP, et al. Risk of primary infection and reinfection with respiratory syncytial virus. Am J Dis Child. 1986; 140:543-546.
3 CDC. Premature Birth. http://www.cdc.gov/features/prematurebirth/. Accessed August 27, 2012.
4 Martin JA, Hamilton BE, Ventura SJ, Osterman MJK, Wilson EC, and Mathews TJ. Births: Final data for 2010. National vital statistics reports; vol 61 no 1. Hyattsville, MD: National Center for Health Statistics. 2012.

5 Langston C, Kida K, Reed M et al. Human lung growth in late gestation and in the neonate. Am Rev Respir Dis. 1984;129:607-613.
6 Yeung CY, Hobbs JR. Serum-gamma-G-globulin levels in normal premature, post-mature and ―small for datesǁ newborn babies. Lancet.1968;7557:1167-1170.
7 SYNAGIS® (palivizumab) injection for intramuscular issue. Manufactured by: MedImmune, LLC. Issued April 2012.

8 MedlinePlus. Medical Encyclopedia: Bronchiolitis. U.S. National Library of Medicine, National Institutes of Health. http://www.nlm.nih.gov/medlineplus/respiratorysyncytialvirusinfections.h.... Accessed August 28, 2012.
9 Merck. The Merck Manual Home Edition [Web site]. Fever. January 2007. http://www.merck.com/mmhe/sec23/ch267/ch267i.html. Accessed August 28, 2012.
10 CDC. Respiratory Syncytial infection (RSV): symptoms and care. Available at: http://www.cdc.gove/rsv/about/symptoms.html. Accessed on December 17, 2012.
11 CDC. Respiratory Syncytial Virus infection (RSV): Transmission and Prevention. http://www.cdc.gov/rsv/about/transmission.html. Accessed August 22, 2012.

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