"Our Amazing Resource": Jack's Craniosynostosis Story

March 12, 2015
Topics: Riley Kid Story

Jack Amos, Indianapolis, Ind.

Jack’s Riley Journey Begins

When our sweet baby Jack was born he looked pretty funny, like newborns often do. At first we thought his odd head shape was just from delivery, but soon the doctors let us know that there was some concern. His forehead bulged out over his face, he had a hard ridge across his head, and his soft spot was much larger than normal. His big brother Luke lovingly called it “Jack’s Big Ol’ Head.”

In the first week of Jack’s life we learned that whatever was going on with this big ol’ head was something that couldn’t be treated by his pediatrician. In fact, our doctor wasn’t able to determine exactly what was happening with Jack’s head but what she did know was this: we needed to go to Riley Hospital for Children. 

Diagnosis: Craniosynotosis

When Jack was just two weeks old we had an appointment with Dr. Joel Boaz, one of the neurosurgeons at Riley Hospital. Dr. Boaz was able to view the skull films of Jack’s head and inform us that he was born with craniosynostosis, the early fusing of the plates of the skull, which happens in about one in every 2,500 births. This condition doesn’t allow room for the brain to grow because the skull can’t expand. Jack’s condition was especially serious because he has bicoronal craniosynostosis, which means that both sutures on the sides of his head were fusing early, so he needed to be scheduled for surgery before his brain growth was at risk. 

A Series of Major Surgeries

In the months before surgery we had a couple of appointments with Dr. Boaz and craniofacial plastic surgeon, Dr. Roberto Flores. They created a treatment plan for Jack, which included a first surgery to put a distraction device in his skull and make room for the brain by pushing it out in the back. The second surgery would be a small one to remove the distractors, and the third surgery would be a cranial vault reconstruction and forward orbital advancement - a major skull surgery to give the brain even more room to grow and create a more natural look to Jack’s head. All of this was terrifying to hear. The most reassuring piece of information that Dr. Flores shared with us was that, while serious, the actual surgery was about a 3 out of 10 on the difficulty scale for the surgeons. What a relief! 

After the first surgery Dr. Flores, our main contact, left Riley for a new opportunity and we began to see Dr. Youssef Tahiri. He jumped right in, getting involved with our family and making sure that Jack had a care plan that worked for all of us. He is amazing with Jack and our older son, and he always sits and answers as many questions as we might have. Dr. Tahiri was the first person to come into our pre-op room on the day of the 3rd and biggest surgery, and he made us feel at ease right away. My husband and I love that he is so passionate about his work. Dr. Tahiri takes great pride in creating good looking Big Ol’ Heads with lots of room for brain growth! 

Care and Comfort During Recovery

Although a hospital stay is always rough when your little one is bandaged and hooked up to monitors, we couldn’t have been more pleased with the care we received from the nurses in the burn unit where the cranial surgery patients usually go. All of the nurses, but especially Erin and Janiel, took amazing care of Jack and our family. They managed Jack’s pain, kept us informed about what was happening and what to expect, and helped us with any needs or requests. We enjoyed their company and always felt like we could ask them for anything. 

Riley Hospital: Our Amazing Resource

Jack’s big new head could grow and change and he could need more surgeries. Jack has a genetic condition called Meunke’s Syndrome, so he also sees Dr. David Weaver in genetics at Riley. This condition means Jack might also experience hearing loss, learning problems, and vision issues, but all of those things are less likely because of the early diagnosis and intervention that Jack received at Riley. 

Because of the amazing resource of Riley Hospital right here in our hometown, our family will never have to worry about driving out of state to get the best medical care for our child. We will never have to wonder if the doctors are as good as they could be. We will never have to wonder if we are doing the best we can for Jack. 

In fact, Dr. Tahiri tells us that what we should be worrying about right now is that he saves some ladies for the rest of the guys in town!

Kate Amos

Kate Amos is former elementary school teacher who now stays at home with her two sons. Kate enjoys exploring Indianapolis with her boys and the very occasional dinner out with her husband, Matt. The family lives in Indianapolis.

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