Help our daughter hear again
Donation protected
Sarah's Journey:
In the summer of 2014, Sarah, our second daughter, noticed that hearing from her left ear became muffled. As parents, we were unconcerned, thinking that it was only temporary, likely the result and lasting effects of a recent cold. However, as the fall set in, the hearing became increasingly worse.
We took Sarah to our family physician who was unable to determine the source of her increased hearing loss. We were referred to an ENT specialist who was unable to diagnose the issue either, at first. In January of 2015, however, Sarah was sent to have a MRI test completed. At this point, we received the devastating news that Sarah had a tumour growing in her left inner ear channel. Due to its progressive growth over time, it blocked Sarah's ability to hear out of her left ear.
Understandably, as parents, fear set in and all we wanted to do was take this away from our 15 year old daughter, as any parent would. We were referred to the specialists and neurosurgeons at University Hospital in London, Ontario. At this meeting, we were able to gain the knowledge that Sarah's medical condition was called an Acoustic Neuroma, an uncommon non-cancerous (benign) and usually slow-growing tumor that develops on the balance nerve leading from the inner ear to the brain. Because branches of this nerve directly influence balance and hearing, pressure from an acoustic neuroma can cause hearing loss, ringing in her ear and unsteadiness or dizziness.
Also known as vestibular schwannoma, acoustic neuroma usually grows quite slowly. Unfortunately, in Sarah's case, it seems to have grown at a more rapid rate and was becoming large enough to be in danger of pressing against her brain, potentially interfering with vital bodily functions.
Treatments for acoustic neuroma include regular monitoring, radiation and surgical removal. Due to Sarah's age and the likeliness of significant growth over her foreseeable long life, a neurological removal was the only responsible remedy. This surgery would result in permanent hearing loss in her left ear, require physiotherapy due to the permanent severing of her balance nerve, and the potential of permanent facial paralysis occurring on the left side of her face due to unavoidable surgical impacts on her facial nerves. For any person, especially a 15 year old teenage girl, this reality was devastating.
After much praying, testing, preparation and anxiety, Sarah's 8 to 12 hour neurosurgery, attended by two surgical teams, was scheduled to occur on July 31st. On that fateful Friday morning, we woke up from our beds at 4:00AM, gathered our bags and made our journey to University Hospital. We arrived, as expected, shortly before 6:00AM. We registered Sarah at the hospital and made our way to the second floor. Sarah, now changed in a hospital gown and on a hospital stretcher, with Mom and Dad tagging along, was brought to the MRI department, to obtain a last, up -to- date 3D image, which the surgeons would use to delicately navigate their way into and towards her brain, hopefully being successful in removing the tumorous tissue.
At 7:45AM, Sarah lay in her bed with intravenous lines in place, fully prepared for an arduous brain surgery. My brave little girl lay in her bed, hugging her Raggedy Ann doll and her well-worn and loved blue bunny. The anesthetist arrived, explaining his role throughout the surgery, and appropriately outlined all of the risks associated with anesthetics. Each time he listed one of the risks, I saw the fear setting in, reflecting in Sarah's tiny and withdrawn body.
For me, I could not be brave any longer. I had to turn away as the tears welled up in my eyes and fear overcame me, thinking I did not want to have this as my final good bye to my dear daughter, Sarah. I prayed in my heart that God not return her home to heaven, knowing that we still needed her here with us.
8:00AM came and the nurse said it was time to go. I kissed her on her forehead and said I loved her so much, turning away to hide the streaming tears running down my cheeks. Mom hugged her bravely, assuring her that everything would be okay and we would see her soon again. The image remains permanently etched in my mind as the hospital staff wheeled her away, as tears now welled up in Sarah's eyes as fear set in. All I could think was, "What have we done?"
Both Dianne and I immediately made our way to the chapel located on the first floor of the hospital and prayed for the Holy Spirit to come and carry our daughter safely through this life event. With tears running down both our faces, we prayed the Chaplet of Divine Mercy, that God would be merciful, keeping our daughter safe, returning her to us safely.
Once we composed ourselves, we sent message to all of our friends and family, to keep vigil and pray for Sarah throughout the day. We waited with family and friends on the 2nd floor of the surgical ward, trying to keep our minds occupied on other things.
For me, the first 8 hours were agonizingly slow. Seconds felt like minutes, minutes like hours and hours like years. The doctors advised us that they would not be providing us any updates or have any contact with us during the surgery, unless something unforeseen had arisen. This was somewhat consoling, almost counter-intuitive whereby we didn't want to see any doctors for the first 8 hours.
Once 4:00PM struck, after 8 hours of surgery, I expected unrealistically that a member of the surgical team would update us with good news. Nothing. 5:00PM came and went. 6:00PM came and went. Fear began to rise again. 10 hours of surgery and no update. What could be going on? Why was it taking so long? 7:00PM came and still no update. Everyone else's family and friends who had a loved one scheduled for surgery had now left the waiting room. Why we re we the only ones still there with no update? I approached the volunteer who manned a desk who was responsible to provided updates on patients. He had no information. 8:00PM came and the volunteer shared with us that he was done for the day, but had no information to share. Minutes now became agonizingly long.
At 8:16PM, Dr. Hebb, Sarah's neurosurgeon came out. He gathered the family together and stated with great relief, everything went well with the surgery as planned. The surgery took longer than expected as the surgical team had difficulty locating her facial nerve in order to ensure its preservation. They took great precaution with their young patient. He shared that they were able to remove the vast majority of the tumour, and that it appeared that Sarah's facial nerve remained intact. With great elation and a sigh of relief, each of us thanked Dr. Hebb for the miraculous work he performed. He indicated that Dr. Agrawal was completing the closure on the head incision, which included removing fatty tissue from Sarah's hip, and re-injecting it into her skull. Once that was completed, permanent titanium meshing would be used to seal the wound prior to returning the tissue over her wound.
At 10:00PM, Dr. Agrawal came to provide us an update. As Dr. Hebb shared earlier, all went well. Sarah did amazingly well throughout the surgery and was currently in the recovery room. As with Dr. Hebb, we thanked Dr. Agrawal for his miraculous work.
At 10:45PM, Sarah was transferred to the 7th floor neurosurgical observation unit. Shortly thereafter, we were finally able to see our beautiful daughter, Sarah. She was fairly alert but rather nauseous, as we had been told to expect. Typical side-effects after a surgical procedure, especially one lasting almost 13 hours! It truly was a miracle and certainly with everyone's prayers and well wishes, God was on her side as the Holy Spirit carried her. We gave her brief but heartfelt hugs and kisses, knowing that she would need some bed rest to recover from this ordeal.
Throughout the next few days, Sarah made an amazing recovery, already walking on the neurosurgical floor at 3:30AM, a mere 4 hours after a 13 hour brain surgery. The neurosurgical care team referred to Sarah as their star patient.
After being moved out of the intensive care neurological area, Sarah showed great strides in recovery over the next few days, skipping over the intense dizziness and nausea that usually accompanies acoustic neuroma surgeries. It became a ritual of sorts for us to walk outside with Sarah, carrying a raisin tea biscuit from Tim Horton's. She would sit in the sun and feed many of the birds that landed around her. What relief we felt!
On the fifth day, we were advised that Sarah would be discharged later that day. Much to our disappointment, Sarah experienced some dizzy spells and fainted. Due to the potential complications associated with this type of surgery, the medical team advised that Sarah should remain in hospital for a couple more days for observation.
On the eighth day, Sarah was again advised that she would likely be discharged from the hospital. However, later that day, we noticed that a clear liquid was dripping from her nose when she bent over. When we shared this information with the doctors, a greater concern developed. After some diagnosis, it was apparent that she had developed an internal cerebral spinal fluid leak somewhere along the surgical area. The fluids' purpose is to surround the brain and act as a cushion between the brain and the actual skull. The remedy would require Sarah to be hospitalized for several more days while her internal incision had an opportunity to heal naturally. To accomplish this natural healing, Sarah had to have a lumbar drain inserted, which essentially required a needle-like tube drain to be inserted into lumbar (Lower back area) region of her spinal column.
On the hour, for the next five and a half days 10cc of cerebral spinal fluid or "brain juice" as we eventually referred to it ;) was drained through this tube. Draining this fluid would relieve the pressure on the incision and allow it to seal and heal naturally. We were advised that if this remedy was not successful, it would require the neurosurgeons to place Sarah into surgery again to find and repair the leak.
On day 14 the drain was removed. Immediately Sarah began to experience severe headaches and nausea. After some attentive medical care, Sarah was able to calm herself and fell quickly asleep. Both Dianne and I were beginning to think that this ordeal would never come to an end, having encountered hurdle after hurdle.
Finally, the following day, Sarah was discharged from the hospital with instructions for physiotherapy exercises to regain her strength and balance. She was absolutely elated to walk out that door!
Sarah continues to recover from her surgical ordeal and seems to have returned to her old self, full of energy and spirit.
By the grace of God, Sarah's facial nerve was left fully intact, with no lasting effects. Sarah's balance is improving quickly and we are confident that, over time, this too shall be overcome.
Unfortunately, Sarah has lost complete and permanent hearing from her left ear. After being counselled and completing some research on our own, the best hearing assistive device for Sarah's condition would be a cross over (CROS) hearing device.
When you hear with both ears your brain can tell where a sound is coming from and even how far away it is. But when you have deafness in one ear, judging distance and where noise is coming from is a challenge. Having only one working ear can interfere with the surround sound experience normally associated with bilateral hearing. In the past, a person with unilateral hearing loss would have to angle their head toward the sound source to try and make up for this shadowing. That’s why CROS hearing aids were invented.
The CROS hearing aid use a microphone on the "bad" ear that delivers sound to the functioning ear via wireless connection, creating a feeling closer to hearing with both ears.
Some of the benefits of using a CROS hearing aid include:
- Improved sound quality
- Wider hearing range
- Improved understanding of speech
- Improved understanding in background noise
- Improved ability to locate sound direction
- Improved ability to identify sound
- Feeling of balanced hearing
- Hearing becomes less tiring
We, Sarah's parents, as with all parents, do not want our children to have any impediment that could prevent them from achieving anything they can dream of doing. Unfortunately, the CROS hearing aid is expensive, much more than we can afford.
We know that Sarah is destined to do wonderful things in her life that will positively impact so many people, both in her community and abroad. That is the type of person she is. In fact, this fall she will begin to fulfill her dream of learning to play the cello. We are unsure what kind of detriment she will encounter with only unilateral hearing, however she remains eager and fiercely determined!
We humbly ask that you consider helping Sarah to hear again through the purchase of a CROS hearing aid. Any amount that you feel you would be willing to contribute towards this expense would be invaluable. Equally as important, please consider forwarding this to all of your family and friends. Together we can do it! Help us to help Sarah achieve greatness!
With unending gratitude to you and our Lord, Jesus Christ,
Roger and Dianne Oei
In the summer of 2014, Sarah, our second daughter, noticed that hearing from her left ear became muffled. As parents, we were unconcerned, thinking that it was only temporary, likely the result and lasting effects of a recent cold. However, as the fall set in, the hearing became increasingly worse.
We took Sarah to our family physician who was unable to determine the source of her increased hearing loss. We were referred to an ENT specialist who was unable to diagnose the issue either, at first. In January of 2015, however, Sarah was sent to have a MRI test completed. At this point, we received the devastating news that Sarah had a tumour growing in her left inner ear channel. Due to its progressive growth over time, it blocked Sarah's ability to hear out of her left ear.
Understandably, as parents, fear set in and all we wanted to do was take this away from our 15 year old daughter, as any parent would. We were referred to the specialists and neurosurgeons at University Hospital in London, Ontario. At this meeting, we were able to gain the knowledge that Sarah's medical condition was called an Acoustic Neuroma, an uncommon non-cancerous (benign) and usually slow-growing tumor that develops on the balance nerve leading from the inner ear to the brain. Because branches of this nerve directly influence balance and hearing, pressure from an acoustic neuroma can cause hearing loss, ringing in her ear and unsteadiness or dizziness.
Also known as vestibular schwannoma, acoustic neuroma usually grows quite slowly. Unfortunately, in Sarah's case, it seems to have grown at a more rapid rate and was becoming large enough to be in danger of pressing against her brain, potentially interfering with vital bodily functions.
Treatments for acoustic neuroma include regular monitoring, radiation and surgical removal. Due to Sarah's age and the likeliness of significant growth over her foreseeable long life, a neurological removal was the only responsible remedy. This surgery would result in permanent hearing loss in her left ear, require physiotherapy due to the permanent severing of her balance nerve, and the potential of permanent facial paralysis occurring on the left side of her face due to unavoidable surgical impacts on her facial nerves. For any person, especially a 15 year old teenage girl, this reality was devastating.
After much praying, testing, preparation and anxiety, Sarah's 8 to 12 hour neurosurgery, attended by two surgical teams, was scheduled to occur on July 31st. On that fateful Friday morning, we woke up from our beds at 4:00AM, gathered our bags and made our journey to University Hospital. We arrived, as expected, shortly before 6:00AM. We registered Sarah at the hospital and made our way to the second floor. Sarah, now changed in a hospital gown and on a hospital stretcher, with Mom and Dad tagging along, was brought to the MRI department, to obtain a last, up -to- date 3D image, which the surgeons would use to delicately navigate their way into and towards her brain, hopefully being successful in removing the tumorous tissue.
At 7:45AM, Sarah lay in her bed with intravenous lines in place, fully prepared for an arduous brain surgery. My brave little girl lay in her bed, hugging her Raggedy Ann doll and her well-worn and loved blue bunny. The anesthetist arrived, explaining his role throughout the surgery, and appropriately outlined all of the risks associated with anesthetics. Each time he listed one of the risks, I saw the fear setting in, reflecting in Sarah's tiny and withdrawn body.
For me, I could not be brave any longer. I had to turn away as the tears welled up in my eyes and fear overcame me, thinking I did not want to have this as my final good bye to my dear daughter, Sarah. I prayed in my heart that God not return her home to heaven, knowing that we still needed her here with us.
8:00AM came and the nurse said it was time to go. I kissed her on her forehead and said I loved her so much, turning away to hide the streaming tears running down my cheeks. Mom hugged her bravely, assuring her that everything would be okay and we would see her soon again. The image remains permanently etched in my mind as the hospital staff wheeled her away, as tears now welled up in Sarah's eyes as fear set in. All I could think was, "What have we done?"
Both Dianne and I immediately made our way to the chapel located on the first floor of the hospital and prayed for the Holy Spirit to come and carry our daughter safely through this life event. With tears running down both our faces, we prayed the Chaplet of Divine Mercy, that God would be merciful, keeping our daughter safe, returning her to us safely.
Once we composed ourselves, we sent message to all of our friends and family, to keep vigil and pray for Sarah throughout the day. We waited with family and friends on the 2nd floor of the surgical ward, trying to keep our minds occupied on other things.
For me, the first 8 hours were agonizingly slow. Seconds felt like minutes, minutes like hours and hours like years. The doctors advised us that they would not be providing us any updates or have any contact with us during the surgery, unless something unforeseen had arisen. This was somewhat consoling, almost counter-intuitive whereby we didn't want to see any doctors for the first 8 hours.
Once 4:00PM struck, after 8 hours of surgery, I expected unrealistically that a member of the surgical team would update us with good news. Nothing. 5:00PM came and went. 6:00PM came and went. Fear began to rise again. 10 hours of surgery and no update. What could be going on? Why was it taking so long? 7:00PM came and still no update. Everyone else's family and friends who had a loved one scheduled for surgery had now left the waiting room. Why we re we the only ones still there with no update? I approached the volunteer who manned a desk who was responsible to provided updates on patients. He had no information. 8:00PM came and the volunteer shared with us that he was done for the day, but had no information to share. Minutes now became agonizingly long.
At 8:16PM, Dr. Hebb, Sarah's neurosurgeon came out. He gathered the family together and stated with great relief, everything went well with the surgery as planned. The surgery took longer than expected as the surgical team had difficulty locating her facial nerve in order to ensure its preservation. They took great precaution with their young patient. He shared that they were able to remove the vast majority of the tumour, and that it appeared that Sarah's facial nerve remained intact. With great elation and a sigh of relief, each of us thanked Dr. Hebb for the miraculous work he performed. He indicated that Dr. Agrawal was completing the closure on the head incision, which included removing fatty tissue from Sarah's hip, and re-injecting it into her skull. Once that was completed, permanent titanium meshing would be used to seal the wound prior to returning the tissue over her wound.
At 10:00PM, Dr. Agrawal came to provide us an update. As Dr. Hebb shared earlier, all went well. Sarah did amazingly well throughout the surgery and was currently in the recovery room. As with Dr. Hebb, we thanked Dr. Agrawal for his miraculous work.
At 10:45PM, Sarah was transferred to the 7th floor neurosurgical observation unit. Shortly thereafter, we were finally able to see our beautiful daughter, Sarah. She was fairly alert but rather nauseous, as we had been told to expect. Typical side-effects after a surgical procedure, especially one lasting almost 13 hours! It truly was a miracle and certainly with everyone's prayers and well wishes, God was on her side as the Holy Spirit carried her. We gave her brief but heartfelt hugs and kisses, knowing that she would need some bed rest to recover from this ordeal.
Throughout the next few days, Sarah made an amazing recovery, already walking on the neurosurgical floor at 3:30AM, a mere 4 hours after a 13 hour brain surgery. The neurosurgical care team referred to Sarah as their star patient.
After being moved out of the intensive care neurological area, Sarah showed great strides in recovery over the next few days, skipping over the intense dizziness and nausea that usually accompanies acoustic neuroma surgeries. It became a ritual of sorts for us to walk outside with Sarah, carrying a raisin tea biscuit from Tim Horton's. She would sit in the sun and feed many of the birds that landed around her. What relief we felt!
On the fifth day, we were advised that Sarah would be discharged later that day. Much to our disappointment, Sarah experienced some dizzy spells and fainted. Due to the potential complications associated with this type of surgery, the medical team advised that Sarah should remain in hospital for a couple more days for observation.
On the eighth day, Sarah was again advised that she would likely be discharged from the hospital. However, later that day, we noticed that a clear liquid was dripping from her nose when she bent over. When we shared this information with the doctors, a greater concern developed. After some diagnosis, it was apparent that she had developed an internal cerebral spinal fluid leak somewhere along the surgical area. The fluids' purpose is to surround the brain and act as a cushion between the brain and the actual skull. The remedy would require Sarah to be hospitalized for several more days while her internal incision had an opportunity to heal naturally. To accomplish this natural healing, Sarah had to have a lumbar drain inserted, which essentially required a needle-like tube drain to be inserted into lumbar (Lower back area) region of her spinal column.
On the hour, for the next five and a half days 10cc of cerebral spinal fluid or "brain juice" as we eventually referred to it ;) was drained through this tube. Draining this fluid would relieve the pressure on the incision and allow it to seal and heal naturally. We were advised that if this remedy was not successful, it would require the neurosurgeons to place Sarah into surgery again to find and repair the leak.
On day 14 the drain was removed. Immediately Sarah began to experience severe headaches and nausea. After some attentive medical care, Sarah was able to calm herself and fell quickly asleep. Both Dianne and I were beginning to think that this ordeal would never come to an end, having encountered hurdle after hurdle.
Finally, the following day, Sarah was discharged from the hospital with instructions for physiotherapy exercises to regain her strength and balance. She was absolutely elated to walk out that door!
Sarah continues to recover from her surgical ordeal and seems to have returned to her old self, full of energy and spirit.
By the grace of God, Sarah's facial nerve was left fully intact, with no lasting effects. Sarah's balance is improving quickly and we are confident that, over time, this too shall be overcome.
Unfortunately, Sarah has lost complete and permanent hearing from her left ear. After being counselled and completing some research on our own, the best hearing assistive device for Sarah's condition would be a cross over (CROS) hearing device.
When you hear with both ears your brain can tell where a sound is coming from and even how far away it is. But when you have deafness in one ear, judging distance and where noise is coming from is a challenge. Having only one working ear can interfere with the surround sound experience normally associated with bilateral hearing. In the past, a person with unilateral hearing loss would have to angle their head toward the sound source to try and make up for this shadowing. That’s why CROS hearing aids were invented.
The CROS hearing aid use a microphone on the "bad" ear that delivers sound to the functioning ear via wireless connection, creating a feeling closer to hearing with both ears.
Some of the benefits of using a CROS hearing aid include:
- Improved sound quality
- Wider hearing range
- Improved understanding of speech
- Improved understanding in background noise
- Improved ability to locate sound direction
- Improved ability to identify sound
- Feeling of balanced hearing
- Hearing becomes less tiring
We, Sarah's parents, as with all parents, do not want our children to have any impediment that could prevent them from achieving anything they can dream of doing. Unfortunately, the CROS hearing aid is expensive, much more than we can afford.
We know that Sarah is destined to do wonderful things in her life that will positively impact so many people, both in her community and abroad. That is the type of person she is. In fact, this fall she will begin to fulfill her dream of learning to play the cello. We are unsure what kind of detriment she will encounter with only unilateral hearing, however she remains eager and fiercely determined!
We humbly ask that you consider helping Sarah to hear again through the purchase of a CROS hearing aid. Any amount that you feel you would be willing to contribute towards this expense would be invaluable. Equally as important, please consider forwarding this to all of your family and friends. Together we can do it! Help us to help Sarah achieve greatness!
With unending gratitude to you and our Lord, Jesus Christ,
Roger and Dianne Oei
Organizer
Dianne Oei
Organizer
Cambridge, ON