Wednesday, September 2, 2009

Contacting St. Louis Children's Hospital

As of our last meeting with Ben's surgeon Dr. Mace, we have felt uncertain about Ben's future head shape. The large opening that was cut during Ben's surgery has already closed, and the doctor has little hope in his head shape changing much from what it looks like right now. I had mentioned helmet therapy or another surgery, asking if that would be a possibility. Dr. Mace wanted to wait another eight weeks to determine what should happen next. Josh and I weren't comfortable with waiting that long, so I made some new connections on a craniosynostosis message board, Cranio Kids. Through that website I was referred to Dr. Matthew Smyth. I emailed Dr. Smyth and have posted our correspondence below.

Dear Dr. Smyth,

I found your name on a message board discussing craniosynostosis. My son was diagnosed when he was two days old with a completely fused sagittal suture. At 12 weeks old, he underwent open sagittal correction with Dr. Charles Mace, at Cox hospital in Springfield. We are now 14 weeks after surgery, and Ben no longer has any soft areas that can be felt. His frontal fontanel is fine and wasn't a problem before either. We met with Dr. Mace last week and he expressed some concern about Ben's head closing early, and said we probably won't see a great deal of difference in head shape from this point on. He also said anything further would purely be cosmetic and he wants to see him again in eight weeks to see if anything has changed.

I am writing because I would like a second opinion. We didn't have any problems with Dr. Mace or Cox hospital for the first surgery, but I'm not sure if we are ok with his head staying as narrow as it is right now indefinitely. I think as a baby he looks fine, but his head is so elongated, I can't imagine him ever being able to wear a bike helmet, or play t-ball or any of the other normal kid things that might require something on his head. I also worry about his teenage years with the protrusion that he still has on the back of his head.

Prior to surgery, his head was very severe. His forehead protruded and the back was almost like a football point. He also had strong indentions at his temples.

I am sure it is difficult to provide an assessment without us visiting your office, but I have included links below that include before and very recent after pictures. My main questions are: Is helmet therapy an option at this point? Should we continue with the "wait and see" approach? Should we have more scanning done? (We haven't done any since he was 2 days old.) Is it really just cosmetic at this point, or could too much pressure be put on his developing brain?

Other medical related things: He contracted staph infection on his incision with the first surgery and was on 5 weeks of antibiotics but is fine now. He is tiny - 10th percentile for height and weight, but has met all of his developmental milestones at an average rate. He has horrible reflux and has been on Zantac since he was two weeks old. Other than that, he's a pretty healthy and happy baby.

Here are some before pictures (scroll to the bottom, I made a website to explain the whole deal to my friends and family):

Here are some after pictures I took last night. I honestly believe it's worse in person, but it was hard to get the right angles to show it. I think Image 3605 really shows the flat spot and the knob, as I affectionately call it.

Thank you so much for taking the time to read all of this. I genuinely appreciate it. The person I spoke with on the phone in your office was also so incredibly friendly and empathetic.
Thank you again.

Lara Garrett

Dear Mrs. Garrett:
I have reviewed your email and the images, and also discussed Benjamin's case with my colleague in pediatric craniofacial plastic surgery (Dr. Alex Kane, with whom I perform craniosynostosis surgery at our center at St. Louis Children's Hospital). It appears that Dr. Mace performed an open strip craniectomy. At our center, we perform a similar operation, but we use an endoscope (small camera on a stick) to make the incisions smaller, and perform more extensive bone removal with lateral releases of bone in addition to the removal of the fused sagittal suture. We then use a custom molding helmet until age 12 months or so. There are multiple approaches to sagittal craniosynostosis, and they vary from center to center.
Given Benjamin's current situation, I might consider a molding helmet. It may help with rounding the head shape somewhat over the next few months. If you choose to go with a helmet, then the sooner the better because he is still in a period of rapid head growth with more effectiveness of the helmet.
If the cosmetic result is sub-optimal after a course of helmeting, repeat surgery could be considered, but usually we don't end up re-operating in these situations unless the appearance is severe/unacceptable. Given the subjectivity, that can be a tough call, obviously.
Dr. Kane and I would be happy to meet with you and Benjamin so we can better evaluate him and advise you. We would not jump to a scan at this point, rather we'd review what scans are already done, the operative report from Dr. Mace, and his current clinical exam.
Please let me or my office know if we can be of further help.

best regards,

Matthew D. Smyth

His response was so warm and friendly, that I would have really liked to have worked with him. However, because he is out of network and I have a horrible HMO, it isn't the most realistic option. We took this information and asked Dr. Mace again about helmet therapy, and have been referred to an orthotics clinic to have Ben fitted for a helmet.

In the picture on the top of the page Ben is in another one of my brother's outfits from when he was a baby.

1 comment:

  1. I'm glad you got a response from the doctor. I'm equally glad that your current doctor has reconsidered. I'm sorry your HMO sucks, as well. Equally glad that you HAVE coverage and that you aren't stressing financial concerns along with any of this. Any kind of treatment always costs, of course and I'm sorry you have to go through with this. As you say, the pictures dont' say much. I haven't ever been able to discern anything. To the untrained eye, in photos anyway, your little guy is just right!