Hello! We would like to tell you our daughter's story she has gone through thus far. Her name is Amisha and she was born with a rare birth defect called Microtia. In appearance, Microtia just looks like the person is missing one or both ears. What they do not see is the potential damage to the kidneys and heart that can come from this defect. During fetal development the ears and kidneys develop at the same time. The heart has already started developing before this but can still be affected by Microtia. One out of every 10,000 children are born with Microtia but one out of every 8000 develop the more serious complications that can come with the condition, which our Amisha was one of them.
Living in a smaller town, we knew little of her condition other than the physical aspect. She was missing her right ear and her head was deformed because of that. She is deaf on the right side where ear is missing and has no hearing at all from that side as it is closed with no canal. At 6 months old she was diagnosed with Torticollis because of the Microtia. Torticollis is the condition when the patient tilts his or her head to one side. Her physical therapist said it was because one neck muscle was shorter than the other and exercise would help. We were happy with that and went on doing her exercises at home for a couple years.
During the six months after starting the treatment we started to see specialists about 5 hours away that knew more about her condition. They were knowledgeable and we were told a lot of information about Microtia. We also were told that she needed a special piece of equipment called a Doc Band immediately. That is a device that dramatically reshapes the skull. It gets fitted at the Children's Hospital for her. After the initial molding, we had to travel back again once a week for 6 weeks to get her fittings adjusted. After the 6 weeks, it was once every 2 weeks for 8 weeks. That's 11 trips at 10 hours a trip within 4 months, during the winter. This device was not covered under our health care and the cost was $3000, plus the trips, hotels and missed wages from work as all of our holiday days were used up with specialist appointments.
Amisha also has had other issues pop up. At the age of 6 months she had a seizure and spent 2 weeks in the hospital until she was diagnosed with kidney infection and she was put on antibiotics because of it. That day changed our whole life. Amisha was put on antibiotics as a prophylactic as she was getting the infections on a regular basis. There is a chance that antibiotics can damage hearing. That is why we started getting her hearing checked every month. Once Amisha reached an age where she could tell us if something felt wrong we immediately decided to take her off the antibiotic. Her infections continued but we did not want to impair the only hearing that she has. When Amisha was 2 we went to see a geneticist to see why Amisha had all these health problems when our son, Krishin who is 2 years older, was fine. He recommended we get a x-ray of her spine as it should have been done when she was born. We came home and Veena did some research and since Amisha had to be sedated anyways as she was so young, she asked if they could do a MRI, which would show tissues and nerves as well as bones. Two days after Easter in 2007, we got the call that Amisha needed to see the neurosurgeon immediately and book surgery. Her spinal cord was tethered, and was attached to a mass at the end of her spine. If Veena had not done the research, Amisha would have potentially lost the use of her legs as it is a form of spina bifida. The spinal cord is supposed to move freely within the spinal column. If there is any reason that the cord cannot move freely, it is tethered. Following surgery Amisha was to lay on her back for 48hrs but even on all the morphine she was on, she still wanted to be held by Mommy.
She had the operation to remove tissue around the spinal cord the morning of July 31, 2007. She was in the hospital for a week and was still not comfortable with the pain, even though she was on morphine along with other medications. Shortly after we got home, there was some swelling around the cut. They suspect that it was some leakage of spinal fluid. Everything healed fine, and we now see the neurosurgeon once a year to ensure the cord does not retether as it can happen very quickly.
We still see several specialists regularly in Alberta during the year. Those include urologist, pediatrician, optical, neurosurgeon, dental and the cleft pallet clinic due to her Microtia. In September of 2009 Amisha had her tonsils taken out and ended up with pneumonia. We keep copies of all Amisha's tests and received a copy from her follow up chest x-ray to ensure the pneumonia cleared up and found out something was found on her heart. With the good help of our geneticist we got into cardiology immediately and they sedated Amisha for a MRI to ensure there was nothing wrong with her heart due to her upcoming surgeries in the USA. She had an EKG and MRI done and more tests and we are thankful that as of right now everything checked out okay with her heart. We will have to have regular tests done to ensure nothing develops as she grows.
There are many well qualified doctors that we have heard about in North America that can perform the physical reconstruction of the ear but only a few stood out. We wanted to find the best for our Amisha, as any parent would. Once an ear is attempted to be made, it cannot be redone or moved due to scar tissue. We also wanted someone who had done numerous ears and could show us results. In November 2005, we had an opportunity to fly to New York and attend a conference with arguably the best USA plastic surgeon for ear reconstruction, as well as another brilliant surgeon that performs a different surgery for Microtia patients. The first surgeon we were impressed with basically pioneered the way rib graft is done today. He is also an accomplished sculptor. Another surgeon we talked with actually aligns the inner bones, creates an ear drum and a canal. Once done, the patient can hear out of that ear! Keeping in mind that it is not even close to 100% hearing, recognizing sound coming from a certain direction helps safety and classroom performance. These two doctors work together and they are the best in the USA. There are 3 ways of creating an ear; Medpor, prosthetics, and rib graft. With the Medpor, they take a plastic mold and graft the child’s skin overtop of it. We have seen some patients with Medpor and talked to many parents and found that there is a higher percentage of rejection from the body. This means the skin does not adhere to the plastic creating sores and holes. The prosthetic is a snap on, snap off ear. This does not only, look the worst of the three but can be more expensive as each ear costs a lot to replace. The rib graft, which we chose for Amisha, is harvesting cartilage from a rib to create the structure of the ear and the body does not reject it as it is from itself. This looks the most realistic looking and has been the most trusted method of reconstruction. We will adding picture of before and after throughout the stages so you can follow Amisha's progress. It took us 6 years to find the right surgeon for our daughter.
She will need jaw distraction in her very near future as her right side of her jaw is not aligned due to the Microtia. We have talked to numerous doctors in Canada and the doctor we have already seen in California was actually named as one of the few doctors that will perform the procedure on Microtia patients. While on these trips we are both missing work, often without pay. So while we are trying to get Amisha what she needs done now, we made this website in hope to get help to raise the money for her Ear surgeries and her future surgeries in the USA to follow from now till she is 16.
