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

My RSV Story. My Voice.

This is still the hardest part of the story to tell.

The story of my girl born way-too-soon, weighing way-too-little.

Andie, 11/27/2000. 1 lb., 11 ons

Because this is the point in the story where we let our guard down.

Where we actually let ourselves believe that our girl’s prematurity was behind her; that we were in the clear.

Andie’s 2nd birthday

It’s the hardest part of the story to tell because we finally met that other shoe that I’d kept waiting to drop ever since we left the NICU.

And it’s even harder to tell because I don’t want to scare you.

I want you to understand that this is our story; our path.  That it was what was supposed to happen to us, not you.

If you’re reading this, you’re probably already living with enough fear in your life, and probably well aware of RSV (Respiratory Syncytial Virus).  And you’re probably also well aware that there is a preventative medicine available for our vulnerable children.  And perhaps like me, you have found that the insurance company will fight you tooth and nail before they approve payment for that vital medicine.

I fought the first year.

And she got the shots.

The insurance company told me then that there was no way she would need the shots the second year.  They said that preemies are no longer vulnerable in their second year.  So I didn’t even try. I had done exactly what they had hoped I’d do.  I’d given up.

And I’d thought we were in the clear.

But we weren’t.

Andie came down with RSV  in January of her second year. We hadn’t known her lungs were still so vulnerable because they’d never really been tested.  Once at home from the NICU, she was basically in lock down and had never even had a cold.

Looking back, I know now that it was supposed to happen as it happened; that our daughter contracted RSV, because it was then that I finally found my voice.  It was then that I looked a doctor straight in the eye and said, “No way.  You will find our daughter a bed at one of the best Boston Hospitals and you won’t stop trying until you do.”

And he did.

And she was out of the hospital within two days.

And I now know that it all played out as it was supposed to, I only wish I’d found my voice sooner and told the insurance company that “No” wasn’t an option.

Our premature story began 11 years ago.  Since that time, I’ve been told that some insurance companies have changed their standards of practice in regard to RSV, and are approving Synagis shots for second year preemies and sometimes even into a preemie’s third and even forth year, depending on the circumstances.   Be sure to find out what’s relevant for your child and possibly gear up to put your voice to the test.

Here is a link that will help you write a Synagis appeal letter if you find yourself headed down that path.

Kasey Mathews About Kasey Mathews

Kasey Mathews (NH) is a mother of two, her son, Tucker born on his due date at an even 8 pounds, and her daughter, Andie born at 25 weeks, weighing 1 pound 11 ounces. Kasey is a writer and author of the memoir, "Preemie: Lessons in Love, Life and Motherhood," in which she openly and honestly writes about her fears and uncertainties as a preemie mom. Kasey considers herself a student in the lessons of everyday life, and regularly observes and finds unexpected meaning in seemingly ordinary events. Her life-lesson stories and much more can be found on her website, www.kaseymathews.com. Follow her on Twitter.

Comments

  1. Hi Kasey! We had Synagis in Daphne’s second winter, and though we were still pretty careful, we had that extra layer of safety. We didn’t have a problem getting approved that second year. Ironically, her first winter, after she had just been discharged after 5 months in the NICU, with a heart defect and still on oxygen, we had a hard time getting the first dose approved. The insurance company claimed RSV season hadn’t started. Her cardiologist begged to differ, they had seen kids inpatient with RSV. We had to get her admitted for a test, and snuck the first dose that way. It was completely preposterous.

  2. Good for you, Kasey, for speaking up. Someone just asked me today, if I had a second preemie, what would I do differently? I said, “I’d advocate for my child more clearly and right away”. Three years after Isla was discharged, one of her NICU pals was put into daycare. In the first week, he contracted RSV. At this stage, he was older and his lungs were bigger, but he was quarantined at home for a month. Thank goodness, we didn’t put Isla in daycare. She had been in NICU 2 months longer than her pal.

  3. Thank you for this info I didn’t even know there are shots available!

  4. My daughter born 7 weeks early 3lbs and 12 ounces

  5. Here in Quebec, the Government is paying for the synagis shot. I can’t understand that insurrance company can go over a Neonatal specialist advice…. Just on the sake of their financial profitaiblity and take our money every months!! Their should be firm regulation for them to stay in business!

  6. By the way, our daugther is currently at the Montreal children’s ICU, having caught RSV. She is on deep sedation, and on High Frequency Oscillatory Ventilation. She is now 5 months old, and was born at 27 weeks of gestation at the Jewish Hospital here in Montreal and the NICU. Her name is Mila Rose Thibault. She is fighting for her life right now, but she is strong and will make it thru!!!

  7. She is doing great! She stayed 5 weeks total at Montreal children hospital! Still receive thé synagis every months

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