Distractor benefits

We are learning that there are some added benefits to having chosen the distractor surgery as the day goes on. We anticipated that they would install a drain in Leah's head to deal with the excess fluid, and that the drain is pretty noticeable and uncomfortable for babies. Since the distractor placement requires less time in surgery and can be considered less invasive than cranial vault reconstruction, the surgeons don't use a drain during distraction surgery. We were relieved to hear that, as it was part of the recovery we were most dreading. As a result she is leaking some blood and fluid from the back of her head since the drain isn't taking it away, and it's causing a bloodstain on the sheet behind her head. The nurses asked the plastic surgeons and neurosurgeons to come up and look at her bandages because of the bleeding, but they did and said it was of no concern at all.

We know that many children with coronal craniosynostosis have related issues with their optic nerve and eye muscles, especially on the side of the fused suture. While Leah was given a clean bill of health from the eye doctor last week, we will need to monitor her closely in the coming months for eye issues as the space around her eye changes and the pressure levels in her skull change along with it. When he was meeting with us after the surgery, Dr. Taylor said that he is working with Leah's ophthalmologist, Dr. Forbes, to study "cranio" kids with distractors to see if they have less need for later eye surgeries. While the usual rate of additional surgery is about 50%, at this point they have had NO distractor patients who have needed eye surgery at a later point. It's obviously very early to tell if that week be the case long-term, as they have been doing this surgery for only a few years, but he did say it's another reason why they are increasingly turning to distractors to treat coronal craniosynostosis.