We will break down the different issues we have experienced and heard about and be putting them in this section. It is not to be considered a complete list of all possible issues or future experiences for you. Most of what will be listed will likely have no relevance to you and we do not have the statistics of people affected by them either. They are listed as a convenience for people not familiar with possible issues and what to do if experiencing them from people who have gone through them first hand.
This portion of the site is still being developed. The information that will be in this page is contained within the story page but will be broken down into a more of a condition or event list, what we learned about it and how to deal with it.

There are many things to look into once you have a child with Microtia. Different regions deal with the issues differently and with a different schedule than others. Some regions ignore the less common all together. I will list the order of things we have dealt with in the order we had to. If your child has other conditions that came along with microtia, this list will be very incomplete. There are two factors to consider when looking at the severity of your child's microtia. The first is whether it is unilateral or bilateral. That just means if it is one ear or both. The second is the grade of microtia. Is the ear only slightly underdeveloped, is there still an ear canal, or is the ear and canal basically missing leaving only a partial representation of an ear? Our daughter has unilateral grade 3 microtia on her right side. That means she was missing her ear and canal on only her right side and only had a small peanut like shaped growth where the ear was supposed to be. Fact: That is the most common type of microtia. The grading really does not matter.

Plagiocephaly / Hemifacial Microsomia

It's hard to spell, harder to say. The common phrase for plagiocephaly this is Flat Head Syndrome. This is common to some extent in babies and is USUALLY caused by the baby favoring sleeping or resting in a single position. As the skull of a newborn baby is soft, it forms a flat spot on the skull. Our child's head did not have a flat spot. It was distorted due to half of her developing slightly slower than the other. Remember: ALL BABIES HAVE DISTORTED HEADS AT BIRTH. This is due to the process of giving birth. With or without having plagiocephaly, this condition is largely cosmetic and usually does not pose any long term health risk. We had a DOC band made for our daughter to help lessen the distortion she was born with. The timeline for a DOC band is very short as it can only be done while the skull is still forming.

So what is hemifacial microsomia? If you have a little understanding of latin you can probably guess. It is when half of a face is smaller than the other. There are a bunch of other medical terms for this as well but they all boil down to the same thing. This is largely cosmetic as well but can pose other risks to your child as well. Speech impediment is an obvious concern that we did not have to deal with much although we did have regular appointments with a speech pathologist once she really started to talk. The most pressing issue we had to deal with came up when she had to start surgeries. The jaw joint on her microtia side did not fully develop and the jaw itself is also smaller (we will get into that later). This did cause some issues intubating her as they could not get a good angle while inserting the tube as her jaw would not open normally. We were lucky that where this was discovered was at a hospital designed for children therefore had the equipment needed to deal with tricky patients. A normal private clinic may not have been equiped for this situation.

Tethered Spinal Cord

While doing research on our daughter's condition we found all sorts of things that are done once a baby with microtia is born that was not done where we were. One of the tests done was a scan of the spine within the first 6 months. As we were about 2 years past that and were undergoing one anyway, we had an MRI performed instead. This test showed two things. One was a mass growing near the botton inside the spinal column causing pressure on the spinal nerve. If left alone this mass may grow and cause further pressure on the nerve and eventually cause permanent damage to it. Some of the affects of this damage could have been losing the ability to walk, bowel and bladder function and many other things.

Kidney Issues

One of the other issues that can pop up deals with the kidneys. Well, one of them to be exact. As with the hemifacial microsomia, one of the kidneys can form different from the other one. It can be smaller, underdeveloped, etc. Our daughter had constant UTIs. A MRI was ordered when she was about 2.5 years old and found her right kidney was smaller than the other. She had other tests done to test drainage of the kidneys and bladder and functionality of the kidneys. One of these tests involved her laying on a small table with two IVs while technicians pumped in slightly radioactive material for special sensors to detect the accumulation within the kidneys. That helped determine their functionality. It is rare that each kidney performs 50% of the work so a variance is expected. A large variance may drive the need for the test to be performed at different times to see if the kidney is getting better, worse or staying the same.

Hearing Issues

This is about the most obvious issue EVERY child with microtia will face. Standard hearing tests will be able to tell if there is any conductive hearing on the side missing the ear or ears. This is the simplest way of telling if there is some form of inner ear developed to allow for hearing. There are different options for conductive hearing aids and some REALLY interesting developments over the last few years. The standard solution at the moment is a Bone Anchored Hearing Aid (BAHA). That involves surgically implanting a titanium post behind where the ear was supposed to be and the hearing aid just clips onto the post. The aid converts the sounds to vibrations that transmit to the inner ear. There is now a Bonebridge option that replaces the titanium post. This is a surgically implated device under the skin. An audio processor then magnetically attaches to the device, transfers an electrical signal through the skin to the device, then it is converted to mechanical waves that are delivered to the inner ear. You have to see what option available to you and is best suited to your child.

Jaw Distraction

Because of the Hemifacial Microsomia, there may be a need to talk to an oral surgeon regarding a jaw distraction. This will straighten the lower jaw to align with the top. In some cases this is purely cosmetic. In others such as ours there is some functionality to it. If the joint is missing or malformed there may be a chance to correct it. The teeth may also not be lining up correctly causing dental or chewing issues. Looking at this early could open other avenues of treatment that can be less impacting. As an example, due to the hard work of our local orthodontist using palate expanders, etc we were able to go from most likely 2 surgeries needed down to 1. This made things cheaper in the end and less of an impact on our daughter.

Ear Reconstruction

This is usually the step most parents what done first. The reconstruction of the missing ear usually has to wait until the child is 6 years old. That is when the size of the ear best matches the size of a fully grown adult. There are 3 basic choices on what to do at this point depending on what is available in your area and what you are comfortable with. We researched the two most common choices and came up with a decision that we felt would best suit our child based on the history of the surgeon and success of the method performed. During the research phase we had met with the two leading surgeons in their field of reconstruction. Both displayed excellent bedside manner with children and expressed the best intentions for the patient, not their pocket book. Our surgical journey was performed in 2010 and the doctor we had chosen to perform it has since retired. When researching for a surgeon, do not be afraid to ask for pictures of past results. Each surgeon is basically an artist you are interviewing to create you a sculpture. Past success does not mean that is what the ear will look like for your child, but consistancy and rated reviews should give you confidence.

The first method I will mention is a prosthetic. We have not seen one but from research this can be expensive over the life of the patient due to loss and damage. It also is more time consuming as the prosthetic has to be applied.

The second is physical reconstruction utilizing MEDPOR. MEDPOR is a porous polyethylene that can be carved to the shape needed for an ear and skin grafted to it, creating the ear. This saves from the material being harvested from the patient so there is less scaring. Overall this sounded good but we have heard from various patients that have had this performed and had some complications. First is rejection of the graft to the MEDPOR implant. Second is damage caused to the MEDPOR implant (sports injury, etc). Either scenario can cause excessive damage and scaring and loss of the ear.

The third is physical reconstruction using the patient's own cartilage. Cartilage is harvested from the patient, usually from a lower rib, and carved into the shapes needed to create an ear then implanted back into the patient. The rib graft method has been performed for decades and is the most proven method of reconstruction. This method is performed over 3 or 4 different steps that require healing between each step. We chose this method for our daughter as the ear is totally made from her and the ear can heal from injury to the soft tissue.

Bowel Motility

This is a current struggle we are still dealing with. Our daughter gets constipated regularily and have had many tests done on the motility of her bowels. She is currently on 3x the daily adult dose of PEG 3350 laxative (Lax-a-day and RestoraLAX are the 2 most common brands). That is a non-active laxative that helps soften the stool for easier passage. We have tried active laxatives that cause cramping and pain to try force the movement but it did not work any better and caused extreme discomfort in our daughter. We have tried diet changes, she drinks a lot of water and have taken her for pelvic floor excercises as well.

Scoliosis

Scoliosis is the sideways curvature of the spine that occurs most often with the onset of puberty. If the curvature becomes severe enough then surgery may be needed to correct it. There are also braces that your child can wear to try help limit the curve from becoming worse while in the puberty growing phase. While these braces need to be worn almost all day, every day and is formed to put pressure on the back to prevent the curve from getting worse, it does not always work. In fact the number we were given was it only works about 25% of the time. That may seem low but if you ever search what scoliosis surgery looks like then you will try give your child any chance they can get. The risk of the curve getting worse after the puberty growth period is over is very low.

Untalked About Things To Do

While dealing with the medical issues of your child, here are a few things that may not come to mind to some parents. These are different things that you may or may not be able to do depending on where you live and the medical assistance you have available to you.

SAVE YOUR RECEIPTS! If you have to travel to see specialists or incure any costs for medications, appointments, etc... save your receipts for tax time! If you can, scan everything into your computer and keep a total of each trip. Most of the time you can only claim the patient and one guardian. You can only claim whatever expenses are not covered under your insurance provider(s).

Does your child qualify for disability? As a Canadian, there are multiple government programs that become available to those who are disabled.

If you have to stay for an extended period of time, look into suites so you can cook your own meals. Also, go to a grocery store to buy a meal. They usually are closer to home cooked and can usually get more food. We hit up Whole Foods when our daughter was getting her ear made and found you can feed a family of 4 and have left overs for $20.

Try to have fun. Remember, they are still kids. Visit a park, take advantage of a few free hours to visit a zoo. Anything. Please remember they are probably more stressed than you are. They are the ones going through this.