If you follow Copilot Clothing Co. on Instagram (@copilotclothingco) you may have seen my reference to my son's misdiagnosis at just six weeks old. He's now 1.5 years old. I'm sharing his story in hopes that it can inspire others, especially new moms, to ask more questions at the doctors office and be advocates for themselves and their babies. I truly believe if I asked for more tests, I would have avoided the weeks of tears and anxiety with my husband.
PREFACE: Please do not take this story as an attack on people who dedicate their lives to health care and helping others. I have the utmost respect for those who study for so many years, work grueling hours and witness so many traumatizing things as doctors, practitioners, techs, nurses and beyond.
In addition, I am not seeking sympathy as I know a misdiagnosis at this point is so much better than my son enduring this incredibly invasive surgery. My heart goes out to cranio and medical mamas. There is no pain like knowing your baby is in pain.
This story starts at day one, because my sweet little booger was breech from like day one. But really, my son was breech in every ultrasound after 12 weeks. At 34 (I think) weeks, he was measuring a bit big but they still weren't worried about him being breech.
In my heart I just kind of knew I was going to have a C-section, and I was totally okay with this. I was very much at peace with the potentially longer recovery, scar, and all that jazz.
At 39 weeks pregnant, my water broke while at home around 5:30am. I went to the hospital where I would wait for the doctor for about three hours before they were available for my surgery.
Colter was born and it was the most incredible moment of my life. He looked just like mama. A whopping 9lbs.
Within hours of his birth, nurses and other medical staff mentioned that he had what they called "breech head". This meant that his head was a little football shaped after it was basically living in my rib cage for the last few weeks and he wasn't squeezed through the birth canal. Most babies have a cone head for a bit, that’s expected! This was the opposite effect from being breech.
He was a cute little football head. It’s hard to see in this picture but the hat barely fit.
If you're curious about that specifically, here's a medical article... click here.
Anyway, I knew that newborn heads needed time to get to proper shape so I wasn't worried.
The first week of my son's life I was a hot mess. The hormone change sent me into panic mode. I had really bad postpartum anxiety, I refused to sleep because I was so worried my son would stop breathing in his sleep. It made the PPD even worse. Plus, my son had acid reflux and would projectile vomit multiple times a day, which was very mentally draining. Poor buddy just struggled to keep his milk down.
A few weeks later at a regular pediatrician appointment, we mentioned to the doctor that our son really liked sleeping with his head turned to the right. I was a bit concerned he would develop torticollis so I wanted to get ahead of it. During the exam, the doctor was vague but said he wanted a neurologist to look at Colter's head to make sure there wasn't any extra fluid or anything.
Admittedly, we knew our kiddo had a big noggin'. It's in his genetics.
I got a call from the local neurology group that day, and scheduled my son to be seen the following week. I was impressed how quickly they got us in.
I was finally feeling human again when I loaded my newborn up and took him to this office. I literally thought it was going to be a waste of 30 minutes and they would tell me he was fine.
When the doctor walked into the exam room -- he didn't speak more than a few words before he told me Colter had Craniosynostosis. He made the diagnosis by simply looking at my baby boy.
"Craniosynostosis is a disorder present at birth in which one or more of the fibrous joints between the bones of your baby's skull close prematurely, before your baby's brain is fully formed. Brain growth continues, giving the head a misshapen appearance.
Treating craniosynostosis involves surgery to correct the shape of the head and allow for brain growth. Early diagnosis and treatment allow your baby's brain adequate space to grow and develop."
-Credit: Mayo Clinic
I had never been more shocked to hear anything in my entire life.
I'm assuming our pediatrician told the neurologist that's what he was worried about for this referral, because the neurologist had the paperwork in his hands to show me as soon as he came in the door.
The neurologist explained what cranio was, and immediately moved onto what happens to fix it... surgery. No scans were done.. no further tests... nothing.
At this point I'm holding my newborn baby in my arms, tears running down my face, flooding my mask and I can't even think straight. I remember sweating, my heart racing, and truly scared about what the next year of our lives would look like.
On the paper, the doctor laid out two surgical options that would be a team effort by a neurosurgeon and plastic surgeon.
When the neurologist told me they would remove my sons skull to fix it, I felt like I was going to faint from pure shock. They told me they would make a incision on my son's head from ear to ear...
These are the two options laid out for me just moments after this doctor walked in the door...
Cranial vault remodeling: This is the surgical approach that doctors have relied on for decades to treat craniosynostosis. This is typically performed for babies 5-6 months of age or older.
In this surgery, a team of doctors:.
- Makes an incision along a baby’s scalp.
- Removes the affected bone.
- Reshapes and replaces the bone to allow for improved overall head shape and increased space for the developing brain.
**I was told this could be performed in Peoria, and my son would need a night or two in the hospital and close care for several weeks at home. They said we could schedule this immediately. (What? already?)
Endoscopic craniectomy: This approach is offered for babies up to 3 months of age, when their skull bones are still soft and bone regrowth is very rapid. During this surgery, doctors:
- Make small incisions in a baby’s scalp.
- Use an endoscope, a thin tube with a light, to see the inside of the scalp.
- Remove the affected bone.
- Guide remaining skull growth with a molding helmet.
After an endoscopic surgery, your child will need to wear a cranial orthotic helmet for a period of time. This helps to mold the head into a normal shape as it continues to grow.
(credit: John Hopkins)
**This second surgery is less invasive but the neurologist told me that if it failed, my son would need the first surgery anyway to repair it. Also this was a newer method and the closest hospital to perform it was in St. Louis.
Both of these were terrifying to me.
The paper laid out those options and a phone number to the St. Louis hospital if we wanted the second option.
When the doctor left, another lady came in and re-explained the options to me. At that point my head was spinning. I tried to ask questions but felt myself just emotionally incapable of asking the right ones.
When I left I called my husband and my mom right away... sobbing. I had to schedule a date for someone to cut my babies head open... OR laser into my babies head. This felt like an impossible decision.
I barely remember what happened the rest of that day but I'm pretty sure my mom left work to be with me.
In the following days my husband and I did a lot of research, we joined cranio groups on Facebook, listened to podcasts from cranio parents... we did it all.
Looking at pictures online of these poor babies following the surgeries was heartbreaking... they had so much inflammation, didn't even look like babies. I didn't know how I was going to send my own child in for that procedure.
Here’s an example of the incision after some healing from the first surgical option…. If you want to see the graphic online photos I’ll let you do that search because it’s hard to see.
*Looking at the before and after pictures from other babies, my husband and I just didn't think Colter's head looked like these other kids. I kept telling myself I was being biased because of course I thought my son was perfect with his cute head. But we kept saying it, Colter's head does not look like these other patients.*
In the following days and weeks, I talked to my boss at work and let them know I really had no idea when I would be back from maternity leave. I told them the diagnosis and I couldn't leave Colter with just anyone after surgery.. it HAD to be me. I couldn't leave him.
My husband found a good research study about the second procedure, the endoscope one, and we agreed to drive to St. Louis to meet with the surgeon that would perform it. We had to schedule this a few weeks out. The anticipation of this appointment was pretty grueling. I thought about it every night.
Nothing like breast pumping in the car with a colicky, acid reflux baby! That baby hated the car.
My whole family knew we were going down there and some friends even sent us flowers and candy for encouragement. We expected the worst but hoped for the best.
Once we navigated this hospital and got in the waiting room I could just feel anxiousness take over.
(Waiting for the doc in St. Louis. I love this picture of him)
The doctor walked and said hello, he had a presentation on his computer he wanted to show about the procedure.
But before he could even show us, he touched my son's head, looked around the soft spot, and looked us dead in the face... and said I don't think he has craniosynostosis.
We had instant tears of joy.
The doctor asked if he could see the scans of Colter's head to see what the Peoria neurologist was looking at..... but we never got scans. No one ordered them... no one ever brought them up. He was shocked when I told him that.
The Peoria neurologist gave us a diagnosis... laid out surgery options... sent us to a hospital in St. Louis during a pandemic...without running the ONLY test to actually confirm the skull defect.
The St. Louis surgeon didn't want to get our hopes up... and ordered the scan we should have gotten WEEKS ago in Peoria.
We went to another floor for the scan and waited for an hour or two for the results.
I cried seeing my baby get the scan. Such a small body in a big machine.
When we got back to the exam room to get the results... this St. Louis doc walked in the room with the biggest smile holding up the scans...
Our son's head was perfect. His skull was open just like it was suppose to be.
He DID NOT have cranio.
Cue the waterworks. We were literally so relieved and happy. I felt like an elephant was lifted off our shoulders.
We left celebrating our healthy little boy... called our families right away and they were stunned. I texted my friends... called my boss. I wanted to tell the world that my baby was fine!!!!
But a few hours later, we felt our happiness turn to anger. Why did this local neurologist put us through weeks of panic? Why didn't he run a single test?
Why. Why. Why.
It took a few days before the shock wore off... and we went back to normal life.
It was another smack in the face when we had to pay the bills for both doctor visits.. especially the trip to St. Louis, since we shouldn't have been sent there in the first place.
Now ultimately we are so incredibly grateful that our son didn't actually have craniosynostosis. We will never take our health or his for granted.
What we hope people take away from this story is to ask questions, do your research, ask for more tests.... never stop advocating for your family.
Mistakes happen... but we believe this mistake came from arrogance and ego.
We don't think the neurologist is a bad doctor, but acted with ego over education.
I recognize this scare is nothing like what some families go through with their babies’ medical care. I just wanted to share this story to encourage everyone to ask questions… ask for more tests. ♥️
Just like babies with cone heads or a flat head, My sons skull naturally went to the proper shape. He’s beautiful.