Re: RSV & Synagis
Originally Posted by CWMom
We were denied at first also. My Pediatrician got several doctors (my Pulmonary Specialist, the NICU doctor, a Cardiologist) to write letters on our behalf stating that we were indeed eligible. She even got a doctor from the AAP who decides the standards to help us. If your doctors feel it is absolutely necessary, then you can convince them to pay for it. But it will require a lot of leg work on their parts as well as yours. My fear now actually, is that we are switching insurance companies also and I really don't want to have to go through the same thing all over again. But I will do whatever is needed to continue the shots, thanks to the ladies on this forum. I now understand how important it is for my daughter.
Re: RSV & Synagis
I just want to give my opinion of the Synagis shot given to my daughter back in December 2002. I delivered a daughter at 30 weeks weighing 4 lbs. 4 oz. on 12/22/02 thanks to betamethazone that helped develop her lungs and make her bigger, she did not have to be intubated or given oxygen. She was "an angel waiting to gain weight" is what the NICU staff would say. She was so incredibly strong. She was sent home on January 14, 2003 was given 2 doses of synagis at the hospital and 1 dose at home from the home health care visiting nurse. She was home 5 days when she quit breathing. (No previous breathing episodes ever) She was rushed from our home to the hospital in town that flew her out to University of Michigan Medical Center. She was intubated and tests where run. She had RSV. The next few days were worse and her health deteriorated. She was by day 5 on full life support (receiving blood transfusions, etc. as they call it, she was on the ECMO machine.) I will post addition info about ECMO as found on the web in Wikipedia. In intensive care medicine, extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased that they can no longer serve their function.
An ECMO machine is similar to a heart-lung machine. To initiate ECMO, cannulae are placed in large blood vessels to provide access to the patient's blood. Anticoagulant drugs (usually heparin) are given to prevent blood clotting. The ECMO machine continuously pumps blood from the patient through a "membrane oxygenator" that imitates the gas exchange process of the lungs, i.e. it removes carbon dioxide and adds oxygen. Oxygenated blood is then returned to the patient.
There are several forms of ECMO, the two most common of which are veno-arterial (VA) and veno-venous (VV). In both modalities, blood drained from the venous system is oxygenated outside of the body. In VA ECMO, this blood is returned to the arterial system and in VV ECMO the blood is returned to the venous system. In VV ECMO, no cardiac support is provided.
VV ECMO can provide sufficient oxygenation for several weeks, allowing diseased lungs to heal while the potential additional injury of aggressive mechanical ventilation is avoided. It may therefore be life-saving for some patients. However, due to the high technical demands, cost, and risk of complications (such as bleeding under anticoagulant medication), ECMO is usually only considered as a last resort therapy.
ECMO is most commonly used in NICU's (Neonatal Intensive Care Units), for newborns in pulmonary distress. It is around 75% effective in saving the newborn's life. Newborns can't be placed on ECMO if they are under 4 and a half pounds, thus ruling out the device for most premature newborns. Newborn infants are occasionally placed on ECMO due to the lack of a fully functioning respiratory system or other birth defect, but the survival rates drop to roughly 33%. The time limit for a newborn is usually around 21 day max. However, Dr. Thomas Krummel, Chairman of General Surgery at Stanford University, has the record for the longest survivor on ECMO at 62 days.
She was then a full 5 lbs. I could not understand why my daughter who was completely healthy at birth even though she was premature would get RSV when I was told over and over again that she will NOT get it and if she does it will be an extremely light case of it. Well, my daughter did survive and was hospitalized an additional 3 weeks with RSV and the complications it caused. I am normally against vaccines and other injections and don't know why I chose this one. I had 2 premature babies before her that were born in the same month that never got RSV. They were not given Synagis or any vaccines. So I'm not sure why she got sick. I just want to give others my story so they can weigh the benefits. She did survive and it could have been worse and we may have lost her. They did tell me that she would probably NOT make it through the night. And she did. She is now 4 years old and has no residual affects of her hospital stay.
Re: RSV & Synagis
As response to the PP - unlike vacinnes, the synagis shot does not contain the RSV virus. All it is, is a human antibody that is lab created that babies born full term would recieve from mom in the womb. Babies born pre-mature did not recieve the protein and that is why synagis was created. It like anything else, would not guarentee the prevention of RSV. Just to clear up what I read above and I may have read it wrong, but there is no way that your LO could have got RSV from the Synagis shot.
Re: RSV & Synagis
Thank you, Thank You, Thank You to babygirlsmom1005 !!!!!
I understand the pp's anxiety re: her daughters illness and her suspicions...but Synagis was not the cause!! It is very frustrating to hear people jump to vaccines as the cause of problems with their children. It seems like vaccines get the brunt end of the deal....it could never be anything in the enviroment, it must have been the shot!
By relating your idea that the Synagis caused the RSV you are planting the seed into other parents.....they may not get the Synagis shot due to your story. That may lead to their child being at a greater danger of contracting RSV.
I am truly sorry your daughter got as ill as she did, and I am very glad she survived the ordeal. Please do research before you try to lead people down a path that could endanger their children.
First: Betametasone does not help your fetus grow....it does mature the lungs faster.
Second: Synagis is a ONCE monthly injection....if I read your post correctly, your child got 3 shots in a short time span.....are you sure all 3 of these were Synagis??
I am a NICU nurse and can honestly say, I have never seen a 30 weeker go home in 3 weeks! I am glad your child did so well....are you sure your child was a 30 week baby? The birth weight suggests that she may have been further along.