Many of us have done this. Posting seemingly innocuous information about our children’s health online or on social media. “Tommy broke his arm! He needs surgery!” Medical student and Brooklyn mom, Rebecca Hughes shares her thoughts about protecting our kids’ privacy and the wisdom of disclosing too much about our kids’ health.
A few weeks ago my kids caught a nasty cold that was going around school. I was home with them all day and spent a little too much time scanning Facebook and Instagram while we were all sprawled out on the couch. I thought a few times about posting a picture from our day. Maybe I’d snap a photo of a sad face or a pile of tissues or a child passed out in my arms. But then I suddenly felt a sense of alarm when I considered all of these ideas.
As a third year medical student, I had finished my pediatric rotation only a few weeks prior. I gained a lot of medical knowledge, but I also received continued training on confidentiality. I was reminded of HIPAA (the Health Insurance Portability and Accountability Act), which applies to any patient in our country, including children, and requires confidentiality and security of personal health information. As health care providers, we are extremely (and appropriately) limited in what and with whom we can share information about our patients. Additionally, in most states, some details about pediatric patients can even be kept confidential from parents, such as teen pregnancy.
At this point it hit me. If I were my child’s pediatrician, what would I be allowed to share with others about my child’s health? How much of what I have already posted would (hypothetically) even cause me to lose my job or license? I started to scroll through my old posts, almost frantically, hoping I hadn’t shared any health information.
But what exactly qualifies as protected health information? The short answer: pretty much any detail about your child’s health. It’s true that if I were my child’s doctor and diagnosed her with a cold, I wouldn’t be allowed to share that with anyone, especially social media followers, without official paperwork and permission. In fact, I wouldn’t even be allowed to disclose the fact that she is my patient or that she came for a visit. Details such as her medications, visits to specialists, and any diagnoses would be certainly be protected.
Here are some examples of health information about our children that are carefully protected by healthcare providers:
- Prenatal care. Your child’s health history begins well before she is born. Did you (or your partner) have an abnormal prenatal test? Was anything found on ultrasound? Did you (or your partner) have a diagnosis like gestational diabetes or lupus that may have affected your child in the womb? Some prenatal diagnoses or conditions may affect a child for the rest of her life.
- Birth stories. I have to admit, I love reading birth stories and I think we’ve all benefitted in some way by learning what we might expect when the big day arrives. It’s really hard not to include some details about your baby’s health. Were there any complications? Was he born by C-section or vaginally? Did he have trouble breathing? Was he born with an abnormality? Was he circumcised? Did he spend time in the NICU? Was he born in a hospital, birth center, or at home?
- Visits to the doctor. How does your child compare in size to other kids? Is she tall or short, overweight or underweight? Does she meet her milestones? Did she get her vaccinations? If so, was she vaccinated on time? Was the doctor concerned about any findings? Did your child need to see a specialist?
- Visits to the hospital. Was your child in an accident? Does he have a new diagnosis? How long did he stay in the hospital? What was the treatment? Were there any procedures? Were the procedures successful? Will this affect his day-to-day life? Does he have a risk of developing any other conditions?
When we think carefully, we’ve all shared this information with someone at some point in time, whether it was on social media or just in conversation with a relative or friend. It’s nearly impossible not to. Perhaps we share it because we are reaching out for help. Maybe we share it to provide comfort or advice to another parent. Often we share it because it’s a big part of our lives and it’s simply on our minds.
So how can we protect our kids while staying connected and seeking or showing support? It takes a village, right? I’m certainly not qualified to answer this and I also think each individual situation is unique. But before we share we should ask ourselves a few questions:
- Is this protected health information? (Remember, the answer is almost always yes)
- Why am I sharing this? Is it purely for the benefit of my child? Because I’m scared? Because I want to help others or raise awareness? Is the benefit to others greater than the potential harm to my child?
- Is this gaining me fame or followers? More likes? Attention? Pity? Is that why I’m doing this?
- Would I want someone else to publicize this same information if it were about me? Even if it’s just a cough or cold, do other people need to know about it?
- How will this affect my child in the near future? Will there be cancelled playdates? Teasing from friends? Unsolicited advice? Unsolicited follow-up questions? Unnecessary overprotection? Exclusion from certain sports or activities? Will my child be ‘labeled’?
- How will this affect my child in the distant future? Will people be able to search my post or recall it years down the road? Will it influence potential employers? Will it hurt the possibility or progression of future relationships? Could my child seek legal action against me for sharing this?
Does this mean we should never share a single detail from our children’s health, whether it be online or in person? I’d say that’s quite extreme and even unhealthy. I’ve personally seen a handful of children benefit from their health information being shared to at least some extent. I once had a neighbor in desperate need of a bone marrow transplant for her son. She posted to our community listserv pleading with us to register as bone marrow donors and increase his chances of finding a match. The community came together and passed along the plea to other acquaintances. I can’t recall the exact information she shared, whether his name, age, or diagnosis were made public, but I do recall he was dying quickly and only a bone marrow transplant would give him a chance at surviving.
Each situation is unique. It is difficult to create or argue for any universal standard for parents to follow when sharing information about their children’s health online. But we shouldn’t forget that this is unchartered territory and that our children have a right to privacy and that we are just one click away from exposing something that is otherwise carefully protected by their healthcare providers.
*Rebecca Hughes and A Child Grows would like to add the disclaimer that this piece is not official medical or legal advice.
Rebecca Hughes has a background in biomedical engineering and is now attending medical school. She lives with her husband and two young children in Brooklyn.