October is Pregnancy and Infant Loss Awareness Month, and November is Preemie Awareness Month. Those who know my family know and/or who have followed my blog know how deeply we've been touched by pregnancy loss and preterm birth. My niece, Abby, and my nephews, Kaia and Aloshua, were all micro-preemies, born months before they should have been.
We spent months in the hospital with the kids. It was days before my sister was able to hold her babies in her arms. Weeks before she took Kaia home. Months before Abby and Aloshua were able to leave the hospital. They spent their first days, weeks, and months in incubators with wires and tubes running every which way. Aloshua was readmitted time after time after time.
Why? Because the effects of preterm birth don't end when the kids leave the hospital. Aloshua had his first surgery at two days old. He's had twenty three more in the ten years since that day. He's wheelchair bound, was on a ventilator for seven years, and had a tracheostomy tube for nine. He still has a feeding tube. Kaia just graduated from speech therapy at 11 years old. He battles a learning disability and Tourette's Syndrome. Abby, at age seven, also just graduated from speech therapy. She's painfully shy, and borderline diabetic.
They're considered the lucky ones. 1.1 million premature infants will die in the first thirty days of life. 35% of all preterm births end in death. Fifteen million children are born too early every year, over 380,000 in the United States alone.
Last year, my husband and I learned that, due to a genetic abnormality with my uterus, the chances of me carrying to term weren't great. Having watched my sister struggle with three preemies, having been there through their individual battles, and having miscarried our first and only pregnancy, we made the devastating decision to forego having children of our own. It wasn't an easy decision by any means, and it's one we still struggle with every day.
But we're the lucky ones. My sister didn't know why she couldn't carry to term. Most women don't. The fear and guilt are crippling. And it's something parents experience every single day. We can save babies born as early as 23 weeks now. But we still don't know why so many are born early or how to stop it. We still can't save more than 17% of those born at 23 weeks. We still don't know how to ensure they don't suffer lifelong consequences like my niece and nephews will.
We know far too little. And we're doing far too little to change that.
That has to stop.
Pretending the problem doesn't exist because it's too sad to think about is the absolute worst thing you can do. Because it's even sadder when it's your child (or your sister's child, or your best friend's child) spending his or her first days in an incubator. It's even more devastating when it's a child in your circle of friends and family that doesn't survive or when its one of them that miscarry. Believe me, I know. I've been there. So has my family. And it's awful.
So what can you do?
For starters, stop and think before passing on the memes floating around about how organizations like the March of Dimes don't donate enough or how they pay their people too much. The March of Dimes didn't get their name because they donate only .10 of every dollar. They got their name because they asked children to donate a dime back when the organization first started. In truth, .76 cents of every dollar donated to the March of Dimes goes to fund research and prevention activities, both of which have made a serious impact worldwide. Dr. Jennifer Howse, the Executive Director of the March of Dimes, has been with the organization since 1990. She has a Ph.D. in psycholinguistics, has worked in top spots in public health for years, and has helped the March of Dimes save countless thousands of children over the years. Does she get paid a lot to do her job? Absolutely. Is she the only one? No; a lot of charities pay their top people a pretty penny, including highly rated ones such as the Make-a-Wish Foundation. Is their work worth the cost? I think so.
When you see those memes floating around, take a minute to post the truth. If you don't want to take my word for it, do your own research. It'll tell you the same things I just told you.
Next, get involved on a more personal level. Volunteer for the March of Dimes or another organization. Participate in the annual March for Babies. Donate baby items to your local NICU, or take a cooler of sandwiches for the families spending their time there. Hold a car-wash and donate the proceeds to organizations like the Ronald McDonald House Charities, which keeps families together by giving them a place to stay when their children are in critical care units far from home.
Tell your story. Whether you've had a preemie, lost a preemie, or volunteered to help a preemie, talk to others about your experience and what you've learned. The more people know about preterm birth, the better.
Review the Prematurity Report Card when it's released (in November of every year) to see where your state falls, what progress has been made, and what's still left to do. Keep up to date with the latest data, and share it with others.
If you're pregnant, please ensure you're receiving adequate prenatal care. Can't afford prenatal care? Call 800-311-BABY (800-311-2229). This toll-free number will connect you to your local health department, which can help you locate free or low cost care. Spanish speaking families can call 800-504-7081.
Finally, Post Purple this November to help raise awareness. Participate in World Prematurity Day on the 17th Write a post about prematurity for your readers. Share the posts of others on Social Media. Write a letter to your Congressional Representatives and Senators, reminding them that they have the power to help save lives.