I am happy to share our third installment of this month’s awareness pieces! We are lucky to feature three different kids, and three different types of craniosynostosis!
Today’s piece features unilateral coronal synostosis (plagiocephaly). The coronal suture runs from ear to ear across the top of the head. The incidence of unilateral coronal synstosis is about 1 in 3,500. When unilateral coronal synsotosis occurs the head will appear asymmetrical, unlike both metopic and sagittal which both have a symmetrical appearance. This is because the open suture will grow at a faster rate to accommodate the growing brain. The result is a very uneven looking head. The eye socket is raised and the forehead is flat on the side of the closed suture, while the forehead is pushed forward and the eye socket is pushed down on the side with the open suture.
The Story of Our Cranio Warrior
Submitted by: Diann Tarney
Travis was born via c-section on December 26, 2014. He is my day after Christmas baby. We had zero complications during the pregnancy and the c-section was elective due to my oldest being a difficult delivery that ended in a c-section.
Travis was born at 7 lbs 5 ozs, 19.5 inches long, fuzz on his head- he was amazing. My husband, John, and I noticed that his faced seemed a little “squished”, we figured it had to be from when he was in the womb- I am short so he was probably cramped in there. We gave it a few days.
Travis lost a little weight like many newborns do and he had to do weight checks. By his 2 week checkup the staff pediatrician noticed his face and head before we had a chance to say anything. She mentioned this huge word called Craniosynostosis, but said we will wait until he is 2 months old- give his head time to work itself out. We trusted this educated pediatrician.
I went home and googled Craniosynostosis. I became convinced Travis had Left Coronal Craniosynostosis. My husband said let’s not worry, let’s wait and talk to the doctor at his weight check in a few days.
We went in to do a weight check, and we were seeing a Pediatric Resident, Dr. Berdy. She believed he had Cranio and got her supervisor to see if she agreed that the next step would be an ultrasound of his head and they believed it should be done way earlier than 2 months old. The next day Travis had an ultrasound of his head- confirming Left Coronal Craniosynostosis.
Our world stopped. I drove my husband crazy with the constant research as we waited to find out the next step.
We were sent to see the Cranial Facial Team led by Dr. Latham at Walter Reed National Military Medical Center, Bethesda, Maryland.
By the time Travis was 3 weeks old we were sitting in an exam room as 20+ doctors and residents passed through from Plastic surgery, Neurosurgery, Audiology, Pediatric Development, ENT, Social Worker, Case Manager, Dental, Speech Pathologist, and a few more specialties. It was a ton of information. We were then faced with this HUGE question. Did we want to do the less invasive Endoscopic Strip Craniectomy with around a year of Helmet Therapy, or did we want to do a Cranial Vault Reconstruction with a Frontal Orbital Advancement? There were so many pros and cons with each choice. We decided to do the Endoscopic Strip Craniectomy.
We went back and forth on if we made the right choice. I feel like every parent does that.
On 30 March 2015 Travis had his surgery. My husband is active duty military, so we had family come from Oklahoma, Ohio, Maryland, and West Virginia to support our sweet Travis. We had friends that work at Walter Reed National Military Medical Center that were there throughout his night in PICU to show us support. It was tough to hear him cry out in pain and all we could do was hold him. But our kids are so resilient. He was and is so tough and brave. Our Cranio Warrior.
He then went through helmet therapy. He was in helmet therapy for 354 days, 53 visits to Cranial Technologies, 6 helmets, 5 head molds, lots of miles…. Travis also has Torticollis. He started Physical Therapy around 8 months old, and is still currently receiving therapy every other week. He is also in Speech Therapy. He used to just scream, he wouldn’t babble, just scream- ALL THE TIME. It was tough to go through even a simple conversation since he would do nothing but scream- now he can even tell me he loves me- and let me tell you-when your little one says “I love you” for the first time- it completely melts your heart, but even more so since he had speech issues. I cried the first time he said he loved me.
They had thought for a while that he might have Occular Torticollis, which is where his eyes would have been why he had such a head tilt. He had to see a Pediatric Ophthalmologist a few times before it was finally ruled out. He now just has to follow up with them once a year.
Travis also had a lot of ear infections. He eventually had to get a set of ear tubes placed by an ENT doctor. He had hearing issues, which is what they believe he had speech issues. Dr. Brenner at Andrews AFB, MD placed his tubes and it was amazing to hear the difference in Travis over a few weeks. He passed his hearing test recently and the tubes are working wonderfully.
Travis still has a “mild” deformity, but it is only noticeable to mom and dad- and if we really point it out to anyone. When Travis is 10-15 years old he will have the choice to get an implant to fix his forehead or not – but it will be his choice.
We were lucky. Travis had one of the best outcomes from Cranio that a child can have. He was able to do the less invasive surgery with helmet therapy, speech and physical therapy, a set of ear tubes, and his eyes checked. He is sweet, loud, funny, and just all around amazing. He will be followed for at least the next 10 years by a Cranial Facial team.
The word Craniosynostosis changed our lives.
Travis has a runner from whoirun4.com named Lauren. Lauren dedicates exercises to Travis and we have “known” her since he was a few months old. The I Run 4 group has been a great support resource for us. We also joined every facebook page for Craniosynostosis support, we reached out and asked questions. The range of support was awesome.
He has physical therapy every other week, speech therapy weekly, he is walking, running, learning, and is doing so wonderful. We educate so many folks about head shape, we embraced the helmet (big thing to remember is to embrace the helmet, don’t hate it), and we learned how it feels to put the life of our child into a surgeons hands and pray that it will all be ok.
Travis is now 20 months old… he will be 2 years old soon, and I can’t believe how far he has come.
Team Travis- Cranio Warrior