By Kerry Sheeran, author of The Marathon, a novel based on the true, emotional journey of a mother and father forced to face their daughter’s life-threatening medical crisis.
Having held my daughter Emma’s hand through eight major surgeries, I consider myself well-versed in what it means to be a patient advocate. All parents are advocates for their children to a degree. From trying to feed them the right foods to connecting with their teachers, helping kids find their way in the world requires a lot of guidance and support from mom and dad.
But when your child has a medical crisis, advocacy takes on a whole new meaning. You become the “voice” of the sick child, speaking for them, through your own lips. Patient advocacy isn’t something that’s necessarily innate—it’s a skill that is developed over time. My husband and I learned this first-hand (with the help of a handful of Neonatal Intensive Care Unit (NICU) nurses at Boston Children’s Hospital.)
An uncertain beginning
Before Emma was born, we received a lot of conflicting information from various doctors. My original OB-GYN was dangerously nonchalant with regards to a couple of red flags that had popped up on my ultrasounds. My subconscious was insisting I get to the bottom of whatever was going on with my unborn baby. I found myself constantly thinking: This is my child, my job. My responsibility.
A second opinion suggested Emma might be born with Down syndrome. A third opinion dismissed the second but suggested she may have an intestinal blockage that would either repair itself in utero or require minor surgery after birth. We saw a pediatric surgeon who agreed with this diagnosis, but I was still riddled with an overwhelming sense of responsibility to be sure. My gut told me we needed at least one more set of eyes on our unborn daughter’s body to know for sure what she was up against.
Less then a week later, as I lay on an ultrasound table at Brigham and Women’s Hospital in Boston, I was happy I had listened to my gut.
The doctor (now the fifth to study our ultrasound) determined that not only were her previous diagnoses incorrect, but Emma’s body was filling with a life-threatening amount of fluid. As it turned out, she suffered from a rare type of bowel atresia—trachea-esophageal fistula and atresia—and had two holes in her heart. The emergency procedure, which they performed in the ultrasound room, saved our unborn daughter’s life.
Two weeks later Emma was born ten weeks premature at Brigham and Women’s and transferred to Boston Children’s NICU. Her stay there lasted over four months and was chock full of teaching moments for us as parents. Encouraged by Emma’s nurses to take part in her care, we became experts in the field of Emma. We paid attention and asked questions. We kept records and wrote things down. We spoke up when we agreed (or disagreed) with a course of action. We learned that we were just as important to Emma’s well-being as the caring and well-trained staff at Boston Children’s because they practiced family care. They valued my husband and I as much as we valued them.
But knowing how to play such an important role isn’t easy. When your child is facing a medical crisis, you know you need to be strong, but you often feel helpless. It can become emotionally paralyzing. How can parents be the voice their child needs when they don’t know the first thing about medicine, care giving or anything associated with hospital stays? These are questions I’ve been asked and asked myself. And while there are no easy answers, there are a few things you can do to ensure you’re the best advocate you can be for your child.
EMMA’s top ten list for patient advocacy
- Be clear, thorough and consistent: Take time to think about when the symptoms began. What improved them or made them worse? Were they related to medication, exercise or something else? Make a list and write down notes. Then be sure to bring the list with you to any appointments, and relay the information to everyone you meet with. Make sure the nurse who checks you in, the pediatrician who provides general care and the specialist you see the following week all hear the same story from you. Do not leave any details out.
- Double check the diagnosis: Research shows the main reason people do not seek a second opinion is because they don’t want to offend their doctor. While second opinions may be awkward for doctors and patients at times (which they shouldn’t be), studies have shown that about 25 percent of patients who sought second opinions received a different diagnosis. Sometimes the most “likely” diagnosis isn’t the right one. Encourage medical professionals to consider other possible reasons for your child’s illness. Don’t be afraid to ask: “What else could this be?”
- Know your history: Remember what treatments your child has received in the past and if they helped or not. Take note of how the illness has progressed. Talk to relatives and think about your family’s medical history, and share that information with your care team.
- Keep records and lists: Write everything down. Everything. When you are dealing with your child’s health, your emotions can cloud memory; keeping detailed notes can help keep the information straight. Also keep your own record of test results, referrals and hospital admissions.
- Know what your child’s test results are and what they mean: If you haven’t heard from the care team about tests at the agreed-on time, you can’t just assume that no news is good new. Call and ask for the results and have those results explained to you. Before you hang up the phone, make sure you know what needs to be done next.
- Learn about the illness: Do some research, either at the library or on the Internet. It’s good to know what your child is up against, but always remember that each patient is different. Talk to other parents whose kids have faced the same problem and learn from them. Understand why certain tests or procedures are recommended for your child and what the risks are.
- Understand the medications: When a medication is prescribed, ask about its dosage, frequency and what exactly it is being used to treat. Find out the best time of day to take it, if it has side effects and whether or not it could interact with other drugs or food.
- Find the right experts: Do some research and try to arrange it so your child can see doctors who have had the most success in treating her illness. Not all doctors and hospitals are the same, and some rank higher in certain specialties than others. Seeing them earlier rather than later can be very important. (I can’t tell you how many parents I met during Emma’s NICU stay who wished they had brought their child to Boston Children’s the first time around.)
- Get to know your child’s nurses: Nurses are with their patients for longer periods of time then any other caregivers in the hospital. They are the people most aware of how treatments or medications are affecting their patients. They see trends; they pick up on things that would be nearly impossible for a physician or surgeon to notice during their rounds. They are hands on, smart, and often times can assess even the slightest change in their patient. And the best part about nurses is that the really good ones become wholeheartedly invested in the health of their patients. Nurses save lives time and time again.
- Trust your intuition: The bottom line is, many parents are not medical professionals, unless medicine happens to be their particular field of work . We seek assistance from experts because we need their help, but parents need to remember that we too play a crucial role in our children’s health. Nobody knows our children like we do. We are the ones witnessing their habits, drying their tears and hearing their cries. We know their good days and their bad days, what heals and what hurts. Parents have a connection with their children that even science cannot fully explain. Trust that you are exactly who your child needs in order to navigate through their illness.
Emma, who will start first grade in the fall, has endured more than most people will in a lifetime. Yet, you’d never know it if you met her. She loves dancing, playing soccer and telling ghost stories in front of the campfire. Her smile is intoxicating. Her scars serve as a beautiful reminder of every miracle ever performed on her. Maybe it is because she was in the right place at the right time. Perhaps it is because her doctors knew what to expect when she was born. Either way, she has beaten the odds and gone on to become a strong little girl who understands her body and has faced every challenge head on. And I have to believe that her father and I had something to do with that.