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 (ack! cheesy! sorry!) was born. He was born six weeks early, and weighed five pounds. He was born 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, there needs to be 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. Many or most of these diseases have treatments. 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. Never mind that 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.
About three months ago, a friend messaged me to tell me 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 32 weeks pregnant, just like I was when I was admitted. She was looking for advice – and my friend asked me if I thought I could say something to this woman. I said that I could, and 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, if you watch these videos bear this in mind, these are the names of the nice nurses in the 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 Miles’ 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 have funded or provided grants that led to the development of the polio vaccine, the discovery of the double helix structure of DNA, and the development of life-saving surfactant treatment for infants with respiratory distress syndrome. They’re partnering, via the World Health Organization, with other Premature Infant organizations worldwide to complete research to stop THIS: (creepy infographic alert!)
(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.