March of Dimes Lobby Day – 2013 Recap

Friend and fellow Amplatz Preemie mom, Rebecca Michael participated in the Minnesota March of Dimes Lobby Day on January 15. Not being able to go, I was curious to what was involved and her perceptions of the day, so I was thrilled when she willingly wrote about her experience.

20130122-115811.jpgOn January 15th, I had the opportunity to participate in March of Dimes Lobby Day at the Minnesota State Capital. What a great event! It was awesome to be able to advocate for mothers and babies in front of the legislators that represent us.

A little background on my family: after a healthy, full-term first pregnancy, our daughter Madilyn was born in February 2009. Two years later, my husband and I found out we were expecting again – baby due in November 2011! Little did we know that Emma would be born in July at only 23 weeks gestation. My water broke spontaneously (also known as PPROM – Preterm Premature Rupture of Membranes) at 22 weeks/3 days and after 5 days on hospital bedrest Emma showed up kicking at 1 lb, 6 oz and 11 ½ inches long.

Lobby Day started with lunch next door to the Capital. It was so exciting to put names to faces for folks I’d met through the March of Dimes and it’s always great to connect with other families that have had premature babies. We had a quick run-down from Phil Griffin (MOD Lobbyist) about how the day would flow and the specific recommendations for which we were lobbying:

  1. New tests to be added to the newborn screening – SCID (Severe Combined Immune Deficiency – aka “bubble boy” disease) and CCHD (Critical Congenital Heart Defects). With both of these disorders, early diagnosis is the key to treatment.
  2. Legislation to extend the Minnesota Task Force on Prematurity through 2015. This task force “is directed to evaluate and make recommendations on methods for reducing prematurity and improving premature infant health in the state.” (MOD Brochure) For obvious reasons, the more we know about prematurity, the more we can try to prevent it and/or more effectively treat premature babies.

Once we arrived at the Capital, we watched as the March of Dimes honored Dr Ed Ehlinger (MN Dept of Health Commissioner) with the 2013 Champion for Babies Award. Then, it was off to the races!

Of the roughly 50 people who attended, we were broken down into five groups to meet with individual legislators. This was my favorite part of the day – getting to talk to the Senator of my district about issues that are important to me. I was a little nervous at first, but our group leader reminded us that our legislators are people – just like the rest of us. It’s our job to tell them about issues close to our hearts (even if we didn’t vote for them)! In all, I told four different legislators about Emma’s story – our fear about how any baby can survive at 23 weeks, about spending 133 long days in the NICU, about infections and exams and xrays and ultrasounds. Most importantly, I shared how Emma literally wouldn’t be here if it wasn’t for the March of Dimes – they created surfactant, which is a substance that helps coat the lungs of infants in respiratory distress. They also developed nitric oxide therapy, which was another intervention to help Emma’s lungs.

As someone who has never spent much time in politics, this was a fun and easy way to get involved and advocate for babies! The girls and I had a great time and are definitely looking forward to doing it again.

Click here for news coverage of lobby day.

Volunteers with Senator Melissa Franzen

Volunteers with Senator Melissa Franzen

Lobby Day Group

Have you attended a Lobby Day for March of Dimes? How was the experience similar or different? I hope Kellen, Owen and I join you next year, Rebecca! Thanks for sharing and for speaking up for all of our babies.