Hand to Hold's Official Blog: Written by Parents for Parents

The Battle for Synagis

The following post was submitted by Stacey, a reader of Preemie Babies 101:

“Where to start?  I wanted to share our struggle with getting the RSV shot for the second season so as to help others feel they are not alone in this battle.  We came home from the NICU on November 7th, with our tiny bundle of joy.  He still barely weighed in at 5lbs.  We had been at the NICU for 2 1/2 months.  The list of instructions or the preemie baby manual was not attached to his car seat.  Actually he was so small that the car seat manual didn’t even have instructions for fitting him.  We made the 2 1/2 hour drive in about 3 1/2 hours.

Once we got home, we called our primary care physician and made an appointment for the well baby exam.   We had picked out a Pediatrician, but since Dawson was born so early, we never had had the time to make our preliminary visit.  Everything clicked right into place.  We went once a week and weighed in.  After the first 2 weeks home, we had to go back to Odessa for Dawson to have eye surgery on both eyes.  The ROP surgery was harder than we thought, but soon everything settled in to normal baby life.

Here’s where our problem began… Our primary health care provider was never available to see Dawson.  He was circumcised by him one month after returning home and then every month we only saw the PA.  We felt confident that they were reporting to his Dr.  All developmental tests were coming back within the 50-75% range and all shots were going fine and as far as we knew…right on schedule.  As the RSV season came to an end last April, we were told by the clinic and the manufacturer of Synagis that we would need to keep all records and be ready to start up again in October 2009.  September 2009 rolled around faster than we thought!  I started the process of calling the manufacturer and found out that the season had been moved up to November.  WHAT?  How come?  Who knows?  Nobody seemed to have an answer…so I called the insurance company.  I then found out that the required paperwork had not been filed by the clinic.  Still NOBODY could tell me what they needed.  It was a big mystery…do you need his hospital records?  How about his information from last year?  The clinic finally said that the insurance company had sent a denial letter because he was 12 months old.  I freaked out.  He had been on the respirator for weeks while in the NICU and I specifically remembered the nurses and NICU Dr’s telling us how important it was that he continue to get this shot into the second season.  His lungs were junky and scarred from being on the respirator and having Chronic Lung Disease…AH HA!  There was the answer.  He needed the diagnosis of CLD (Chronic Lung Disease).  I called the clinic back.  The PA informed me that she didn’t think it was necessary.  I was shocked.  How did she even know.  Had she personally worked with preemie babies?  The answer was NO.  They simply didn’t want to have to mess with all the extra paper work.  You see, Dawson was the only baby that they were having to order the shot for.  It finally became clear that we were going to have to fight the insurance company and needed an actual Dr to help.  I spent days calling Pediatricians in Odessa, just trying to just get someone to talk to me.  All of the offices were so packed and busy that none of the staff would even give me a chance.  Day in and day out I racked my head trying to think of what to do next.  I sent e-mails to everyone I knew including our respiratory therapist from the NICU, who had become our friend.  She was our angel.  Soon the new attending Neonatal Dr. called me and said he was making us an appointment at the Texas Tech clinic with the lead Pediatric Physician.  After one visit and lots and lots of faxed Dawson files, we had the approval.  Dr. Fitzsimon’s sent the following to Blue Cross Blue Shield: 1) a list of clinical diagnosis of Chronic Lung Disease from the hospital 2) time spent on the respirator 3) a letter expressing her belief in the necessity for the RSV prophylaxis.  We still were unable to receive the shot until the middle of November, but thank goodness for her, it finally happened!

So my advice is this…first DON”T give up!  Second…be ready to do research and find out why it is that you are not getting approved.  Third…get a Dr. that is willing to help you.  If your attending physician is not responding and not willing to do the work…CHANGE Dr’s!  I know from the research that I have done, that the insurance companies are denying families right and left who should be being approved.  There was also a new “cost effective” guideline writted by the Acadamy of Pediatrics that they are falling back on and blaming for the criteria of denial.  This new guideline expresses the concern for the expense of the shot and is trying to regulate it only being given to babies born before 34 weeks of prematurity.  This within itself is awful, but still does not say anything about not giving it solely because your preemie turned 12 months old.  I hope this helps and I pray we can continue to have the choice and ability to get what we need for our children.”

Thank you for sharing your experience and advice, Stacey!

Please leave any comments or additional advice you may have for the benefit of all of our readers.  Thanks!

Afton Mower About Afton Mower

After Mower (UT) lost her firstborn son at 21 weeks.  Her daughter was born a year and a half later at 27 weeks.  The NICU was overwhelming and isolating and it was through those two experiences she was led to found this social hub for parents to find the support they needed. Afton also gave birth to another daughter, born two days overdue after four months of strict bedrest. She believes it is a tender experience to hold a special baby in your arms when his spirit returns to his heavenly home, a miracle to watch tiny babies survive the risks of prematurity and a blessing to hold a healthy full-term baby after months of difficulty and sacrifices.

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