At Alyssa’s routine 2 month well baby visit on April 29, 2003, the doctor noticed that her head had a flattening on the back right side. It was nothing totally abnormal we were told, just probably because she preferred to hold her head to the right side. They called this torticollis, or a shortened neck muscle. We were told to try and re-position her when she sleeps and to feed her from the other side to make her stretch her neck to the left.
Alyssa’s 4-month check up was June 23rd, and it quickly approached and it was becoming apparent that this flat spot had not gone away. We had tried to re-position her, but were not having a great deal of success. Again the doctor explained that we needed to keep doing the positional therapy. They also gave us a referral to see a neurosurgeon. It took several weeks to get an appointment for our first neurosurgeon. It was during this period that we found the words, plagiocephaly and craniosynostosis. There was a lot of research done by us and the CAPPS website became the most visited site from our computer.
Going into the visit with the neurosurgeon on August 5, 2003, we already had come to our conclusion based on looking at pictures from the Internet. We knew that Alyssa had a fused lambdoidal suture. The doctor looked at her and measured a “X” across her head. The front right to back left measurement was one inch shorter than the front left to back right. He prescribed a head X-ray and said not to worry that he had a gut feeling that it was purely positional plagiocephaly. We would be more aggressive with positioning techniques and probably get a helmet and all would be well. During the visit, he pointed out things we hadn’t really noticed. We had never looked down at the top of her head. From that view, her deformities were obvious. Her right ear was an inch further forward than her left ear. The back left portion of her head was bulging to the left a pretty good amount. Finally, the front right was bulging forward. Previously, we had only really noticed her forehead being asymmetrical and the left eye appearing slightly smaller than the right, and feeling the flat spot with your hand was obvious.
We left slightly placated and went to get the X-rays on August 21st at St Peter’s Hospital in New Brunswick. The results of which we received that day from our pediatrician: the radiologist’s opinion was that there may be evidence of fusion. We thought so. We called the neurosurgeon who was not impressed nor wanted to see her. He prescribed a 3D head CT scan, which we promptly scheduled for August 29th. Getting a 3D CT scan for an infant isn’t easy. They have to be sedated so they don’t move.
We arrived at the Robert Wood Johnson Hospital bright and early for our appointment and Alyssa promptly fell asleep. Her turn was coming up and they came in and woke her up to sedate her. They started with a small dose because she had been sleeping. Well, sleep did not come again. They gave her another dose. Finally, sleep came and we brought her to the CT room. As fate would have it, she woke up when we put her down on the table. Back to the prep room for sedation again. They finally gave her a full dose and she was out in no time and sleep right through the scan. We picked up the scans on the way to the next visit to the neurosurgeon, which wasn’t until September 9th, and again the radiologist report stated there was evidence of premature fusion. This was two different radiologists from two different hospitals that were confirming what we already knew in our hearts. The report even gave specific film frames where they saw this. Upon arrival at the doctor’s, he made another quick measurement, still one inch difference.
The films were put on the wall and right down the line he pointed to each suture and said, “open, open, open, open………” Again telling us, this is not craniosynostosis, she does not need surgery. She will be fine. We left knowing we were going elsewhere for another opinion, and we let the doctor know we were not satisfied.
We were referred to Doctor Greenberg by another craniosynostosis parent from the CAPPS website. We emailed him Alyssa’s pictures we had taken with a digital camera on Monday, September 9th. We had an appointment on Wednesday, September 11, 2003. We went into his office and he was aghast. Her head was so misshapened. He felt her head all over, took some of his own pictures, and finally after almost half an hour of examination and talking with us he put the films up on the wall. After reviewing the films, he stated that he thought her right lambdoidal suture was partially fused. What a relief! But he wanted to keep the films and show his radiologist to be sure. In any case, she needed help. We still had not tried a molding helmet because the form letter from the first doctor made no headway with the insurance company. They claimed it was a cosmetic item and not necessary. Doctor Greenberg called us a couple days later with the news that his radiologist did not see fusion from Alyssa’s films. What a sinking feeling we had there. BUT, he still wanted to pursue aggressive therapy because her head needed to be fixed. It could not go on this way for much longer. There is a small window of opportunity to operate on a child’s skull. It really needs to be done before their first birthday, and the earlier, the better because after that the fusion process will have naturally started and growth may not be where we need it to heal.
September 26th we had a follow up visit with Doctor Greenberg where he officially diagnosed Alyssa with plagiocephaly and prescribed a molding helmet. . Doctor Greenberg gave us a letter of medical necessity as her deformations were bad enough to be considered severe. Our pediatrician also gave us another letter because she was now getting to be worse than they first saw her. October 28, 2003, we finally got approval from the insurance company to get her helmet! We continued to closely follow her progress, well actually her lack of progress. Her deformities became more apparent every week as there was absolutely no change.
When we finally got Alyssa fitted for her molding helmet, it came from a company with a new technology, the StarScanner. This great machine used a laser to create an incredibly detailed outline of her entire head in less than two seconds! We then got a picture of this printed out by the computer. Looking at this picture, the shape of her head was so far off. She was really bulging to the front right and back left. The back right was so pulled in you wouldn’t believe it was a human head. The day we picked up her helmet was the day of Alyssa’s first visit with Doctor Schneider , November 19th. He looked at her for about 15 seconds before saying that she was a very curious case, displaying symptoms of both positional plagiocephaly and craniosynostosis.