World Prematurity Day and the PREEMIE Reauthorization Act

prematurity

November 17th marks a day of global awareness and global action on behalf of all babies born too soon—World Prematurity Day. As the mother of a baby girl born prematurely and gone too soon, prematurity affects me on a daily basis. It has profoundly affected and changed my life and continues to do so as I am pregnant again with my second child, a son who is now 26 weeks old in-utero and still not fully to term. I am thankful for each and every day that I have with him and continue to stay positive that he’ll hold on till his 40 weeks when he’s ready to join us on the outside.

According to the March of Dimes, as many as 15 MILLION babies are born prematurely every year, with 1.1 million of them dying from complications and 500,000 of these occur in the US alone. My Maggie is one of those 500k. Why does this happen? Pre-term labor happens for many reasons:

  • Lacking Proper Medical Care: This, I feel, is the biggest problem of all. Consider the rising costs of medical care today. Not everyone has health insurance, either because their employers don’t offer it or because they simply can’t afford to be on a plan. My hopes are that the Affordable Care Act will help out with this (in the US), including the expansions in Medicaid occurring (at least in some states—Florida opted out), but we’ll see how far it goes.
    • But what if you’re pregnant and just started a job? Most employers won’t insure you for the first three months, and those three months could be vital to your pregnancy and well-being.
    • Or what if you change jobs in between? Again, a gap in coverage could cost you.
    • And if you lose your job, as I have experience during both of my pregnancies, it means you’ll have to wait until Medicaid kicks in to be able to see a doctor. By then it could be too late.
    • The process to obtain Medicaid can also be complicated, and getting a Medicaid case worker on the phone o help answer questions can take hours out of your day (something that may be nearly impossible for someone who is employed and struggling to get by).
    • Paying out of pocket is not always an option, either. Just recently, I was trying to pay out of pocket at my doctor’s office in order to have a follow up after having a cerclage put in. Because I was recently let go from my job, my insurance was cancelled and waiting for COBRA to kick in. Unfortunately, COBRA was going to take over a month to fully be active, so I attempted to pay for my visit, but was being asked to pay $990 due to being close to 28 weeks of pregnancy (they have a policy where out-of-pocket patients must pay up to $990 by the time they’re in their 28th week and there was no way around this). This left me to either have to a) try and find a new doctor who would charge less, b) pay the ridiculous fee, or c) find another way to be covered. Fortunately I was eligible for Medicaid and after many phone calls was able to resolve this issue. But for others, it may not be an option and they’ll end up skipping doctor’s appointments which could end up harming them and/or their baby.
    • Additionally, finding a good doctor isn’t always easy. Some people live in rural areas, far from a nearby doctor’s office or hospital. Others might have many doctors around, but lousy insurance that won’t many doctors won’t take. Or you might have the lousy luck I’ve had in the past and end up finding yourself in the care of inconsiderate doctors who simply don’t care for their patients, discouraging you from asking questions and obtaining the level of care you deserve. I had three different OB/GYNs during my first pregnancy: the first was incredibly rude, the second was good but I lost her after losing my insurance, and the third was careless, treating my pregnancy lightly and once I informed him that my child had died, he simply stated that “it happens”, without wanting to dig deeper into WHY it happened and HOW it can be prevented in the future. This apparently happens a lot.
  • Health Risks and Complications, including but not limited to:
    • Cervical Incompetence and Uterine Abnormalities
    • Diabetes
    • High-Blood Pressure
    • Infections: Urinary Tract, Bladder, Vaginal, STIs/STDs
    • Kidney Disease
  • Lifestyle Risks and Complications, including but not limited to:
    • High levels of stress (being of a lower socio-economic background, lacking emotional support from friends/family, working a high-stress job with little to no consideration for your condition, etc. can all cause your stress levels to rise which can be stressful on the baby, causing you to potentially even care less for yourself and not eat or rest properly)
    • Domestic abuse (physical AND emotional)
    • Drinking, smoking and drug use (while we would hope that with today’s research individuals are now ceasing all these activities once they find out they’re pregnant, many still do not. Sadly, some may claim to have stopped but as addicts, may continue and not seek help. If the stigma against drug users were to cease, and if more programs were put in place to help users quit without expensive rehab facilities, perhaps they would be more willing to look into seeking help, and more help could be given to these individuals)
  • Lack of Prenatal Education: Many people don’t even know that preterm labor can happen to anyone. They don’t realize how dangerous not being regularly checked by a doctor or midwife can be. They don’t know that standing for prolonged periods of time at a job can cause physical stress. They don’t know how much water they should be drinking (dehydration can cause contractions which could lead to pre-term labor). They have no idea what proper nutrition should be during pregnancy. They don’t realize that the abusive relationships they’re in could cause damage to their babies, don’t know how to get out of those situations, and lack the help to do so. They don’t know what signs and symptoms of pre-term labor look/feel like (contractions every 5-10 minutes, spotting, fluid leaking from the vagina, pelvic pressure, lower back ache, etc.). They just don’t know.

So how can things change? The March of Dimes is raising awareness about prematurity these days, and this is wonderful. They are also funding research via grants to find out more about the causes, preventions of and care for for pre-term labor and premature birth. Sadly, there aren’t many other organizations that I know of doing the same.

One very fantastic resource for pregnant women, however, is KeepEmCookin.com. Started by Angela Davids, who experienced and beat PTL with two of her pregnancies, this site serves as an excellent source of information for anyone who is pregnant, experiencing a high-risk pregnancy, having to undergo procedures to keep her pregnancy going (including taking hormone shots, having cerclage put in, being put on bed rest, etc), and anyone who just wants more information about all the different complications that might come with pregnancy.

More recently, the PREEMIE Reauthorization Act recently passed both the Senate and the House and is on its way to becoming law. You can read more about this act, which includes provisions to strengthen the ongoing research to find ways to prevent premature births and help premature infants, in the following links:

House Passes Bipartisan PREEMIE Bill to Help Prevent and Treat Premature Births, Boost Pediatric Care

PREEMIE Reauthorization Act (March of Dimes)

Senate Passes Alexander Bill To Reduce Premature Births (The Chattanoogan)

I personally plan to write to each of the cosponsors on this bill and thank them for their work (including Senator Barbara Mikluski, Senator Mary Landrieu and Senator Alexander Lamar).

I find it interesting that finding any news stories covering this act was difficult. It could reflect the way we as a society see and deal with premature birth: out of sight, out of mind. For those who have never been affected, it probably doesn’t mean much. But the fact is, it’s almost certain you’ve either met someone who was born prematurely or will know someone in your lifetime that is or is affected by premature birth. I never thought anything would go wrong when I first got pregnant. And when it did, I was angry because I wondered if it could have been prevented had I just known more of what to look out for, if I had fought harder to obtain the medical care I needed and deserved. I’ll never know, but I do know that this time around, I have made sure to ask all the questions possible, to do as much research as needed, to ensure my baby and I are well taken care of, even if it does get stressful at times.

If you’re reading this, I hope you’ve never and will never have to experience why my family has. But I also hope that you make sure you are informed of the facts, that you support all the pregnant women around you who may face such problems, and that you join us in spreading awareness today and every day.

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