Advocating for Your Child: What I Learned as a Social Worker and Parent
When Professional Advocacy Meets Parental Instinct — and Your Child Becomes the Toughest Case of All
By Jill Wilkey, BSW
mom to two brave hidden cleft heroes
As a social worker by profession, I am no stranger to the world of advocacy. I have stood in courtrooms alongside people fighting for their freedom. I have advocated for the rights of the unhoused. I have disputed insurance companies for discharging patients who are in no shape to return home.
But I never imagined the person I would fight the hardest for would be my own child.
Am I Crazy?
My first daughter, Clara, was a healthy baby. For the first year of her life, we only went to the doctor for routine check-ups. After she turned one, our family was in and out of the pediatrician’s office constantly.
She had every virus you can imagine, including two cases of pneumonia. We spent countless sleepless nights administering breathing treatments and running steam showers, only to end up in the ED on several occasions. Her breathing issues and infections persisted, and I began to feel that something was wrong.
After countless rounds of steroids and antibiotics, Clara’s infections became resistant to standard oral antibiotics. Her ear infections were relentless – they were not responding to any oral antibiotics. I asked the pediatrician if she thought a referral to an ENT would be appropriate. The pediatrician told me that it was not urgent.
That’s when I started asking myself, “Am I crazy?!”
Why Is This Birth Defect So Difficult to Diagnose?
“Because laryngeal clefts are rare — and can appear in otherwise healthy children — there seems to be a lack of awareness among the medical community. The symptoms may not appear acute or urgent, but often present as a combination of seemingly minor issues that accumulate into something more serious.”
Creating the Dream Team
After months of being repeatedly dismissed from the pediatrician’s office, I dusted off my social worker hat and donned it, as I researched other pediatricians in the area. There had to be someone out there who would take my concerns seriously. I had always been able to effectively advocate for my clients, and now I would channel that same energy into fighting for my daughter.
I realized I needed to join my child’s medical team rather than work with them from the side. I researched other pediatricians, made calls, and got them to listen to my daughter’s medical history.
I am so grateful that we found our current pediatrician. The first time he met Clara, I could tell he was listening to me, and he was concerned for Clara, too. He immediately referred us to several specialists including ENT, immunology, and pulmonology. He also started her on an asthma regimen, which helped us manage her breathing issues more effectively. We were no longer frequent flyers at urgent care and the ED.
After two years of appointments and procedures, Clara’s amazing team was able to diagnose her with a type 1 laryngeal cleft, asthma, and an immune condition. Her laryngeal cleft was closed through an endoscopic stitch repair in August 2025.
Today, we are no longer frequent flyers at urgent care and the ED. She is a happy, healthy, spunky 5-year-old.
What I Learned
1. Trust your gut.
I know it sounds cliché, but as parents, we know when something isn’t quite right. You may have experienced simply looking at your child and knowing something was wrong. I can always tell when Clara isn’t feeling well, even if there are no outward signs.
Trust that voice in the back of your head. It’s there for a reason.
2. Ask for a second opinion.
As a certified people-pleaser, I had never been one to question a medical professional’s findings. I didn’t want to seem like I was challenging their expertise. But after Clara’s first bronchoscopy, the ENT told us there were no abnormalities in her airway, and I couldn’t accept that.
I asked her pulmonologist for a second opinion. We were referred to another ENT who performed a triple scope, and finally gave us the answers we had been praying for.
I’m so glad I advocated for that second opinion.
How to Get a Second Opinion
“Never hesitate to ask for a referral. Remember: you are the expert when it comes to your child. If you have concerns, ask for a consultation with another clinician or specialty. This includes therapies, tests, swallow studies, sleep studies, etc. Providers are usually happy to send a referral for you, and you can always reach out to your child’s primary care provider for referrals as well.
Since laryngeal cleft is a rare birth defect, it’s not uncommon for parents to travel to an experienced expert. Families often learn about these specialists through children’s hospitals, rare disease organizations, or other parents, and can ask their current provider for a referral based on the rarity of the condition. Many specialty centers also allow families to self-refer and will explain what records are needed. Insurance approval can take extra steps, such as prior authorization or an out-of-network request, and an intake coordinator or patient advocate can help. Seeking another opinion isn’t being difficult—it’s a form of informed advocacy.”
3. No, you’re not crazy.
I second-guessed myself constantly. It’s easy to compare your situation to others and feel like maybe it’s “not that bad.” I remember walking through the hospital, seeing children with far greater visible needs. My child was walking, talking, eating, and playing. Others were bedbound.
I wrestled with guilt. Was I overreacting? Was I putting her through unnecessary tests?
But in the end, persistence, patience, and trusting my instincts paid off.
4. Document, document, document!
If something seems off, take a picture. Record your child eating. Write down symptoms — even if they seem minor. You know your child better than anyone else.
Never hesitate to share photos, videos, or notes with your child’s medical team. Your documentation could provide the missing piece.
5. Establish open communication.
A typical pediatric visit lasts just 16 minutes, according to Vanderbilt Health. It’s nearly impossible to convey the full picture of your child’s symptoms in that time.
Make sure to share new symptoms with every provider, and ask your child’s care team to communicate with each other, if possible. Clara’s doctors shared information across disciplines, which ultimately led to her diagnosis.
Effective Ways to Communicate With Medical Providers
“Use the online patient portal to its maximum potential. Track referrals, request medication refills, and communicate with your providers by providing real-time updates. Never hesitate to send a message or request an appointment when something seems out of the ordinary.
If an electronic portal is not available, or if you see providers in multiple medical groups, you may want to consider assembling a medical binder or notebook. Include your child’s diagnoses, medications, medical and surgical history, a list of all providers/contact info, and notes regarding recent symptoms, hospitalizations, and surgeries. This can also be very useful for ED trips, since those providers will likely not know your child or their history. I like to bring all this information with us when traveling.
Encourage communication across specialties. A team of experts does not necessarily make an expert team. As a social worker, I was one member of a multidisciplinary team. Each specialty identifies issues from a unique perspective, and it often takes combining those perspectives to solve complex problems. If your child is seen by multiple providers in the same medical group, it is likely that they are able to message each other. When I found out Clara’s medical team had a group chat about her, I felt the dream team coming together! ”
6. Build your support network.
We can’t do this alone. Seek support from fellow medical parents and caretakers. Do not be afraid to reach out for advice and ask for resources. Most medical parents are eager to share information or simply listen. LCN’s private Facebook group is a great place to connect with others: https://www.facebook.com/groups/thehiddencleft
I hope that this article resonates with those who are desperately seeking answers and provides some comfort and advice to families who are on a laryngeal cleft journey. I am grateful to Laryngeal Cleft Network and the awareness and community that it has brought to this condition. I’m also excited to bring some of my knowledge and experience to facilitate LCN’s new Virtual Support Group, while also helping to raise awareness for all hidden cleft heroes and their families.