Worthy Cause – World Preemie Day

I sat down on Friday night to write a piece about a totally different worthy cause.  But then, well, things happened, but frankly, I’m glad.

Eight months ago today, the coolest person in my life was born. He weighed five pounds, screaming and red and translucent and amazing. He was born fighting and luckily, he was born in the right place.

The insanity that followed is something I’ve talked about a few times now. Honestly, it’s not over, and probably never will be. Premature birth happens for any number of reasons, many of which are still not understood. In my case, it was *likely* a winning combination of a weak cervix and a UTI. It may have even had something to do with barometric pressure! What?! My point is, we need more research.

Premature birth causes a host of issues for infants, including (but not at all limited to!) birth defects, respiratory failure, neurodevelopmental issues (brain bleeds and farther reaching issues), extended/severe jaundice, gastrointestinal complications like NEC and GERD, and the ominous catch-all, failure to thrive. There are treatments for many of these complications, however, these treatments come at a cost. In the great United States, the stress of a child teetering daily in the brink of death coupled with overwhelming financial strain can tank the strongest constitution. In other countries, knowledge, training, and availability of care are sorely lacking (please refer to my previous statement regarding my son’s fortunate place of birth).

This laundry list of potential issues is a horrifying burden for any parent. Three months ago, a friend messaged me to say that through her mothering circle she’d heard of a woman in a very similar situation to mine – her membranes had ruptured prematurely, and she was on bed rest at the same hospital I’d delivered in, waiting to give birth. She was 30 weeks pregnant, just like I was when I was admitted. She was looking for advice.

When we began corresponding, I started by trying to just provide some resources, websites, books, things that comforted me – which turned into suggestions: don’t let anyone tell you this thing, if you watch these videos bear this in mind, these are the names of the nice nurses in the NICU and PCN, don’t be afraid to let yourself get mad.
It turned out that I had A LOT to say.

Leslie is amazing. She’s kind, confident, and open. She’s earnest and beautiful and strong and actually, I can’t believe that some of the things I said were helpful, and not possibly terrifying, although she has never intimated as much. We kept in touch, and a month ago, she wrote to me and said – I think we should do something. I said, I think you’re right.

Talking to Leslie helped me resolve some unresolved issues I had with my birth and our NICU stay. In the end, she helped me just as much as I helped her. We started (Leslie started) the RVA Preemie Parent’s Support Group a few weeks ago to try to recreate this experience for others. She is a beast. She made fliers, she did research, she visited hospitals and gave them the address to the Facebook page to refer women to. What a strong, awesome woman. And she knew it was World Prematurity Awareness Day today, and I did not.

So in her honor, I’d like to dedicate my Charitable Organization post not to my intended, original organization – but instead to The March Of Dimes.

A lot of people recognize the name of the March of Dimes but don’t actually know what they do.  I didn’t, until I was given a massive purple tote bag with their logo on it stuffed with a binder of information about babies like ours. The official Mission of the March of Dimes is simple: “We help moms have full-term pregnancies and healthy babies. If something goes wrong, we offer information and comfort to families. We research the problems that threaten our babies and work on preventing them.”

The March of Dimes does everything from pack information for parents of premature infants to create bright, cheerful family rooms adjacent to NICU spaces. They payroll NICU social workers to maintain a constant presence in about 200 hospitals nationwide, to provide support to families who sorely need it. They are leading the drive to eliminate elective early birth and raise awareness of its implications.

Most importantly, they fund medical research into causation, prevention, and treatment for disorders resulting from premature birth. They’ve funded or provided grants that led to the development of the polio vaccine, the discovery of the double helix structure of DNA, & the development of life-saving surfactant treatment for infants with respiratory distress syndrome. Through the World Health Organization, they partner with other premature infant organizations worldwide to complete research to stop THIS: (creepy infographic alert!)

preemie infographic

(click to enlarge because GOLLY IT’S BIG!)

To give to the March of Dimes, or for information on participating in a walk, you can visit the giving page of their website at http://www.marchofdimes.com/giving/giving.aspx

If you’d prefer a more local approach, consider purchasing and gifting preemie sized clothing to your local hospital’s NICU or PCN.

Lastly, if you’re local, and gave birth prematurely, please consider joining our group here: https://www.facebook.com/groups/rvapreemie/ to provide support to new NICU parents.

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