Did you know that January is National Birth Defects Awareness Month? In recognition of our journey and the journey of so many families like ours……I wanted to reshare our own story with Lydia’s birth defect.
Birth Defects Awareness Month : Our Story
When Lydia was born nine years ago, she had what appeared to be a bruise on her ear. We assumed it was from the procedure I had a few weeks earlier (she was breech and the doctor attempted to manually turn her). It seemed minor at the time, we went home from the hospital…..and didn’t think anymore of it. At one of her early doctor appointments, the doctor noticed that the bruise had grown.
As first time parents, we were…..adjusting and slightly overwhelmed with the day to day needs of an infant. Because the growth was gradual, we hadn’t noticed major changes. Thank goodness, the pediatrician was proactive.
Because the bruising was on her ear, we were sent to an Ear, Nose, and Throat specialist. He inspected her ear, and declared it was a venous malformation. Her hearing wasn’t impacted, and we were sent on our merry way. Over the next few weeks, the malformation continued to grow. This was odd, since malformations were not supposed to evolve and change. This time we noticed, in fact, we started taking daily pictures on our phones so that we could compare growth and document what was happening (in hindsight, this made a huge difference and I’m so glad we did it).
Based on our doctor’s recommendations, we went to a LOT of appointments.
Two visits to specialists, one visit to our local children’s hospital, and many dermatology visits later…..we had our answer. Lydia was born with an infantile hemangioma. Easiest way to explain it? Hemangiomas are abnormal growths of cells or blood vessels. They look just like birthmarks. They’re usually not a big deal, they grow for about the first six to eight months of life….then slowly involute or disappear over time.
When are they an issue? When they are in an area where growth can cause damage……to internal organs, eyes, or in our case…..cartilage. Because Lydia’s hemangioma was her ear, there was concern that permanent malformation would be caused if it continued to grow. There was also concern it could have an effect on the ear canal and her hearing.
Lydia’s Treatment
So, we began an (at the time) experimental treatment. Medicine is a funny thing, it’s amazing how a medication intended for one thing can sometimes be used for another. Twice a day for a year, we applied a glaucoma medication called Timolol to Lydia’s ear. In fact, Lydia is now in all kinds of medical journals. She was a total success story, and if you’re a medical professional who works in dermatology…..you may see Lydia’s pictures at a medical conference discussing this treatment option.
I learned so much from our experience during Lydia’s first year of life. I learned about the importance of early medical intervention, about the importance of knowledge and information and medical support.
Did you know that according to the U.S. Centers for Disease Control & Prevention (CDC), birth defects affect 1 in 33 babies born in the U.S. each year? That’s a LOT. There are additional challenges that come with having a child with a birth defect, and preparation can be REALLY helpful.
I’m proud to partner with March of Dimes for Birth Defects Awareness Month to talk about the support they provide for moms and babies. Last year, they helped to serve 2,400 moms-to-be through mobile health units to give healthcare access to uninsured families. 4 million babies were born and received lifesaving newborn screening and 19 million women were reached through our programs, education, and resources. The U.S. remains among the most dangerous developed nations for childbirth, especially for women and babies of color…..and programs LIKE those offered by March of Dimes are helping to make important changes.
I hope that our story has helped to shed some light on how birth defects can look for one family. While each story is unique, this Birth Defects Awareness Month felt important to revisit ours in hopes of helping others.
Join the conversation about National Birth Defects Awareness Month by visiting?March of Dimes at marchofdimes.org/birthdefects.
