We all dream of having a healthy baby. What happens when your baby has problems at birth?
My first pregnancy was an amazing blessing. From conception through delivery, I could not have asked for a better experience. Like most first-time moms, I studied and read every book on pregnancy. I took prenatal classes, worked on a birthing plan with my team and packed my bag. I was ready to be a mom.
So what do you do when the pediatrician inspects your newborn and says she has a birth defect?
My first reaction was to get as much information as I could. Trusting in my day-old relationship with my pediatrician, I launched into a series of visits and research. We discovered that inaction could mean a permanent disability. Timely attention to the issue would involve risk and a lifetime of maintenance, but also provide the best chance for normal functioning.
What would you do?
Here's a short list of ideas to help regardless of the size or severity of the news you receive-
- Recognize the grieving process: Denial, Anger, Bargaining, Depression, Acceptance. You'll mourn the loss of the "healthy child" you thought you delivered as you move to accept the new reality you've been given.
- Find a support group. Chances are, other parents have gone through the same steps you are now taking. Having someone to talk with who's "been there," can make a huge difference.
- Gather information. Having the facts won't change your situation but may make it easier to know what you'll be facing.
- Ask questions. Never be afraid to ask. Keep a list of questions in a notebook. Ask the same questions to all health care providers, parents and other resources you find. You could see a pattern in the answers you get, which could lead to more answers.
- Check with your insurance. While you deal with the emotions of a birth defect, you'll also need to consider the financial impact to your family. Does your insurance cover the condition? What resources are available through your insurance provider or other third-party providers?
- Celebrate milestones. Perhaps your child's developmental milestones will have a different time table. You can still celebrate the steps, no matter how difficult the journey.
- Opt for additional screenings. Whether before delivery or right after, additional screenings can identify a long list of potential issues, such as PKU. Check to see what minimum testing is required in your state and consider purchasing additional tests.
You can find loads of information on the Center for Disease Control-Birth Defects, the National Institute of Health's Child Health and Human Development , the American Pregnancy Association, and the March of Dimes.
We opted for our daughter to have corrective surgery on a day's notice as the chance for success depended on a quick response. She responded well and the surgeon felt confident we could manage the work that would be required to care for her. I analyzed my pregnancy to see if my binge on Halloween candy had caused the defect. Nope. Turned out our insurance wouldn't cover some of the expenses despite the letters from several physicians describing it as "medically necessary." Add a new line to the family budget for Out-of-Pocket Medical costs.
We found a daughter of a friend in Boston with a 5-year old with the condition. Life had become normal for them, meaning they lived with the daily routine that we'd need to adopt. I could only dream of what that "normal" would look like for us. We were learning what being THE 1 in 20,000 meant.
Over eight years later, we keep asking questions. We feel like the lucky ones. While we never like to compare our children, we know that many parents deal with issues dramatically more severe than ours. Having a baby with a birth defect has taught us to rally around all parents who have babies with problems, big or small.
How have you dealt with birth defects in your family?