Friday, August 16, 2013

A visit with Dr Mackenzie

Last month, we went to the US and Canada. The main reason for this trip was to see my brother get married (both of our girls were flower girls :) ). While we were there, we wanted to take the opportunity to visit Dr Mackenzie at Alfred duPont Hospital in Wilmington Delaware.

Dr Mackenzie is somewhat of a celebrity amongst the dwarfism community. He has the most experience maybe out of any orthopedic surgeon in North America when it comes to dwarfism in general, and more specifically Diastrophic dysplasia. We wanted to take Maddy's x-rays and MRI's to him so that he could consult with our doctors in Hong Kong and ultimately get the best medical care for Maddy here.

We had high expectations from this appointment and were not disappointed. The hospital itself is gorgeous, with a large outdoor playground. While we were waiting to see Dr Mackenzie, the kids were entertained by a large model train set. After the appointment, in the waiting area, we were surprised to find a hands-on reptile show which the girls loved. Also we were very happy to meet two families I've known online for some time - Ian (who also has DD) and his mother Ren (who I blogged about here - although unfortunately the video is no longer available online :( ), and also Sonia and her mother Melissa (I emailed Melissa when I was pregnant with Maddy! Sonia has Osteogenesis Imperfecta, or "Brittle bone disease").

The staff were all warm and friendly, and Dr Mackenzie himself was amazing.There were two main things that Dr Mackenzie would change about the way we manage Maddy's orthopedic issues.

Of greatest concern is Maddy's spine. Her kyphoscoliosis is significant and she will inevitably need spinal surgery to correct it. In the mean time, Dr Mackenzie recommended that we start casting and bracing for her spine - this would hopefully delay the need for surgery and could make surgery easier when the time comes. It will, however, be hot and uncomfortable to deal with on a daily basis!

Secondly, Dr Mackenzie was concerned that Maddy's ankles did not have enough support. She currently is using an orthotic insole to try and support her ankles, but Dr Mackenzie feels she would benefit from orthotics which cover the ankles as well. Again, I'm sure this will be a difficult change and will be uncomfortable for Maddy.

We have an appointment next week to discuss these thoughts with our orthopedic surgeon here in Hong Kong. Hopefully he and Dr Mackenzie will liaise with each other. While I know that these changes may be difficult to manage, I also know that if the long-term benefits are significant, it is the best thing to do. The aim always is for long-term mobility rather than short-term comfort!

Finally, some pictures from the hospital playground:

(and I'm still kicking myself that we got no pictures of Maddy with Ian!)


  1. Hi, found you through Miggy. I'm a pediatric PT and wanted to say that appropriate orthotics should NOT cause any discomfort for Maddy! In fact, they should reduce some discomfort for her, both in giving extra support, and in aligning her foot and ankle better. They should be an unequivocal good thing. I have zero experience in Hong Kong so I can't guarantee this, but if her orthotics cause pain, take them back--they shouldn't!!! She might not be thrilled about them right out of the gate because they are different, and her standing and walking will feel different, and because three year olds aren't exactly known for their acquiescence to new things ;), but I think she'll come around. :) Liz the PT

    1. Hi there Liz. Thanks for your comment and sorry for my slow response! I know what you mean about them not causing discomfort - but having used a Pavlik harness and AFOs in the past, I know that things which restrict movement can be frustrating for Maddy. I know that they will be beneficial and may even be necessary, and will not cause her pain - but I also know there will be a bit of time to get used to it, particularly if it happens in the hot Hong Kong summer!! Fingers crossed though, she will adjust quickly.