Dealing with Microtia
It is very important to understand the different specialties that should be involved in the care of your child with microtia:
It is important not only to provide caring medical service for children who have Microtia, but also to provide guidance to the parents of these children.
Dealing with Microtia from the Parent’s Point of View
Why me? Why my child? Why did the doctor not tell us anything was wrong on the ultrasound? Was it something I did wrong? Should I have taken better care of myself? Is my child deaf? I shouldn’t have been drinking during that time! I shouldn’t have smoked during my pregnancy!
All these questions have been raised by hundreds of our patient’s parents. It is only human to blame oneself or at times others during the initial shock of seeing your brand new baby born without an ear.
We feel strongly that the first consultation with the parents of a child born with microtia should be soon after the birth, not later during the time of the reconstructive surgeries. The first encounter with parents should consist of understanding their emotional pain and giving them time to work through their emotions. Parents are looking for any comfort they can get as well as looking for answers to many of their questions. It is very important to bring up a few issues during the very first encounter:
1. Don’t Blame Yourself!
This is one of the first things a parent wants to do. The true cause of microtia is still uncertain and blaming oneself will not accomplish anything for their child.
2. Why couldn’t we see this on the ultrasound?
Although many anatomic abnormalities may be identified on the ultrasound, it was more difficult to fully evaluate the external ear. The reason was that technicians were concentrating more on organs such as the heart and kidneys, rather than the ears. Luckily, the imaging technology has vastly improved so that organs such as the ears can be seen with much more clarity.
3. Is my child deaf?
Although the possibility of permanent “nerve” hearing loss is present, most children with microtia have a relatively normal inner ear. Just because there is no hole present does not mean that the child is deaf. When there is no hole there is hearing loss and when there is favorable anatomy of both the middle ear, inner ear and facial nerve, there exists a good possibility of hearing correction.
4. What are we supposed to do?
Although having a child born with microtia is a traumatic experience, it is important to see things in a positive light. Unfortunately, there are many children born with life-threatening illnesses and anatomic abnormalities. Microtia in itself is a relatively benign condition and should be treated as so. This is a difficult concept to accept when one has a child with microtia. It takes time! As long as there are not other severe associated abnormalities, these children live a relatively normal life.
5. How do I raise my child with microtia?
Raise them normally! Of the hundreds of children I have seen in my practice within the past few years, there has been a common pattern. The children who have had their ears covered by long hair have a more difficult time dealing with people looking at them. These children are aware that their parents are trying to hide the microtic ear. They tend to have less self-confidence and have more difficulty adapting to social surroundings. In contrast, the children who have been raised as any other normal child have had the fewest difficulties with social surroundings. They are well aware of the microtic ear and have dealt with it in their own way. In addition, if these children understand that their ear will be fixed down the road, they can adapt better.
6. Will there ever be hope to improve my child’s hearing with microtia?
The answer is yes, yes, yes. There are various options on how to deal with the hearing in children with microtia.
As long as the hearing is normal in the unaffected ear, then there is always the option of not proceeding with any further treatment on the side with the microtia. Once the child is older, then maybe he/she can decide to do something at that time. There are adults with microtia that have normal, productive lives without any hearing intervention.
The second option is the ear canal surgery. There will have to be various anatomic tests such as CT scans to evaluate the anatomy of the outer, middle and inner ear. If the child is a candidate for the ear canal surgery, then a full explanation of the risks (such as damage to the facial nerve) and benefits are crucial before proceeding.
Finally, the option that has become much more common is the placement of a Bone-Conduction Auditory Processor, otherwise known as a Bone-Anchored Hearing Aid (BAHA). This procedure is technically easier to perform and has the added advantage that the implant can be placed as early as 5 years of age, depending on the thickness of the skull. There is essentially no risk to the facial nerve and if the patient ever decides later in life to remove the implant, the outer abutment can be removed without further sequelae.
Who are the specialists involved in my child’s care?
It is crucial that the parents of a child have a full understanding of the evaluation process. Parents are initially overwhelmed and may not fully understand what will happen and who will see their child with microtia the first few years.
A list of specialists is provided below as a guide to the parents of these children with microtia. Always ask questions. Remember, that is what we are there for!
The ear deformity is usually first noticed by the Ob/Gyn during the delivery. Sometimes the ear abnormality is not so obvious and may be found by a nurse or physician after the delivery. Remember that the Ob/Gyn has responsibilities to make sure that the mother is taken care of during the delivery. The Ob/Gyn is not involved in the care of the child after delivery.
2) Neonatologist / Newborn Nursery
Most of the time, the newborn with microtia will go straight to the newborn nursery. This is where the pediatrician usually sees them for the first time. If there are other concerns, the newborn may be admitted to the neonatal intensive care unit where the neonatologist does the evaluations.
3) Geneticist Sometimes a specialist called a Clinical Geneticist is consulted. This kind of doctor is usually a pediatrician with special training in clinical genetics and hereditary diseases. This doctor will do a full family history and help you figure out incidences and chances of having another child with microtia, etc…
4) Pediatrician / Family Doctor This is probably the most important doctor that will oversee the care of your child. In other words, all of the specialists should send their evaluations to your child’s pediatrician or Family doctor so that he/she is aware of all of the recommendations.
5) Microtia Surgeon (Ear reconstructive surgeon)
Although some feel that this doctor does not need to get involved until the time of reconstruction, I strongly feel that this specialist should be involved from the very beginning. There are so many insecurities and questions that the parents have about their child’s reconstruction, that early interaction is very important. This also gives the parents plenty of time to seek different opinions and feel comfortable with their child’s future surgeon.
6) Otolaryngologist (Ear, Nose & Throat or ENT) There are different kinds of Otolaryngologists that your child may be referred to: 1) General ENT specialist 2) Pediatric ENT specialist 3) Neuro-otologist. All of these doctors had similar training although they chose to branch off into different subspecialty areas. These ENT doctors will be the ones evaluating the hearing and reporting back to your child’s pediatrician or family doctor. The doctors who will evaluate your child for further hearing surgery, such as BAHA (bone-anchored hearing aid) surgery or atresia surgery (opening the ear canal) will be the Neuro-otologists or the Pediatric ENT specialists.
7) Audiologist These hearing specialists are usually part of an ENT doctors office, although some are totally independent. They perform hearing tests and also are closely involved with hearing aids, etc…
Do I have options if my child has an unsatisfactory result?
We see children from all over the world that present to our center for the first time to consult about a very unsatisfactory result. Most of them have had multiple surgeries and realize that it is time to stop and ask for another opinion.
Unfortunately, most of these children have too much scarring to dramatically help them with a revision surgery. Instead of putting these children through any more surgeries, we have educated these families about the use of a prosthetic ear. Our feeling has been that the prosthetic ear is left as a last resort. If a child presents to our office for the first time and we notice that he/she is embarrassed to show the ear that has been operated elsewhere, it is extremely important to show them that there are still options. If they could have something that could replace the reconstructed ear with something that could look very closely like the normal ear, most of them would choose this option.
It is so important to spend all the time necessary with the child and his/her parent to educated them about the positives and negatives of ALL surgical options. Only then will the parents feel like they have done their due diligence before exposing their child with microtia to another surgery.
Dr. Bonilla stresses the importance of communication. All of Dr. Bonilla’s patients have access to him on his cell phone after hours.