Forget the silence... Zuzia can hear!

We had been expecting a healthy daughter. However, when Zuzia was born nothing was the way it should. I noticed she was missing an ear. They took her from me. Additional tests, uncertainty, fear like never before. There could have been more defects, and our daughter’s future was in great doubt. Can any parent image a worse nightmare?

Zuzia has already turned one year old. A couple of months ago we were ensured that her ear defect is microtia and that she has no other genetic defects. There is also a problem with her heart, but for the time being it just needs to be monitored. What a relief! Now we are concentrating on the ear and making sure it doesn’t hinder her proper development. If only it was so simple.

Given the fact that her right ear is underdeveloped, her development is delayed. She doesn’t walk, she has only just started crawling. She doesn’t babble, even though children at her age are trying to utter their first words. She keeps turning her head to the left side, which may result in permanent degeneration of the spine, and in problems at school later on. Zuzia is under the constant supervision of the Institute of Physiology and Pathology of Hearing in Kajetany near Warsaw; she is receiving therapy and supervision by numerous specialists. Since the very beginning we have tried to seek solutions and possibilities to make sure she can hear normally, and we have even bought her a hearing aid. Still, our efforts don’t always work, which is why we keep looking for better solutions. Every parent wants to do the best they can for their child.

The serious hearing loss, a closed auditory canal and an unformed earlobe are the obstacles on our daughter’s way to health and happiness. We often hear that ‘it’s just an ear’... but this one-sided hearing loss means a series of problems hindering our child’s development.

On an online forum for parents of children with microtia we found out about a surgical procedure in California. It is extremely expensive, but it would mean that our daughter could be given a normal ear, and she would be almost 100% certain of being able to hear like other kids do. Having consulted doctors in Poland, we have taken the very difficult decision to raise funds for her to get that ear surgery in the USA, although it will cost almost 400,000 zloty (€93,328; $105,568). Her case has already been consulted with Mr Youssef Tahiri and Mr Joseph Roberson from the Hearing Device Center in Palo Alto, California, and now we know that the surgery is possible!

In the US, only one surgery is needed to model a new earlobe, open an auditory canal and insert a specialised implant. This means that only one operation will be needed, and the child will receive anaesthetic only once. There will be no scars and no risk, and the surgery itself could be performed once Zuzia turns three years old!

Is it possible to treat Zuzia in Poland? Yes, it is. However, ear surgery is possible only around the age of 10. It is also performed with a different method in numerous stages, and involves complications. We know from experience that the effects of a surgery in Poland may be painful and unpleasant. We know a person with microtia who underwent the surgery in Poland. Today he says that if he had known all the complications, he would have tried to get an operation in the US, or would have chosen to keep the ear with which he was born. The ear reconstruction involved six operations, and that was without the reconstruction of the auditory canal. Costal cartilage was used, which resulted in its total absorption by the skull. The new ear became covered with hair, and there is a scar on his ribs.

We do not want our daughter to suffer such a fate, and that’s why we must at least try to make the surgery in the USA come to fruition. If we succeed, Zuzia will be able to hear normally before she turns four! She may not even remember the fact that she never had an ear. We are worried about her development, and are determined to do our best so that she can develop better. We would really appreciate it if you decided to help us and contribute to Zuzia’s development. Thank you in advance.

Klaudia and Emil, Zuzia’s parents

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Microtia means not only the lack of an ear. Sometimes it means spending several days in hospital. Those are tests to check whether it is possible for the ear to hear in the future. We hope it will be possible! 

Her bone conductivity means she can wear a hearing aid which conducts sound, and thus she can partially hear with the ear with microtia. It is extremely important for her to develop like her peers. Her defect hinders her development, as a child needs to activate all the senses and both their cerebral lobes in order to develop properly. The ear problem means that Zuzia’s left cerebral lobe is not developing fully. She has already undergone ABR tests three times, with more ahead of her, together with another stay in hospital. Before the end of this year she needs to have an MRI carried out under general anaesthesia. 

Fortunately, Zuzia is a brave patient. After the surgery in the US, she will no longer need a hearing aid and will have a normal ear with an open auditory canal. We trust that the surgery will take place, but we cannot make it happen alone. Thank you so much for being with us and supporting us in the fight for her health!

Kind regards,

Klaudia, Zuzia’s mother