Kate’s Story – Loss and Discovery Part II

This post (Part II) has taken me too long to get out. Unfortunately Kate has been very unwell with another episode of mitochondrial diasease and cyclical vomiting. We have been in and out of hospital and are headed there again this morning. Feeling very sad, frustrated and tired. Feeling sorry for Kate and trying hard not to let this disease define her life.

 

February 2010 we found out that Kate’s disease has caused permanent profound hearing loss. Kate was deaf, and the shock that we felt at the moment we were told soon gave way to an acute medical situation  brought on by the general anesthetic from the procedure. What I would like to tell you about in this post is the 12 month journey we took toward trying to give our child the best of both worlds she was faced with, the Deaf world and the ‘hearing’ world.

Before Kate’s diagnosis of profound hearing loss, we had become acquainted with cochlear implant technology simply by meeting families of children with profound hearing loss at the CHEO Audiology clinic. Most of these families had chosen for their children to receive cochlear implants because they were from hearing families and growing up in a hearing community. Some children had one CI, others had 2. All of the children seemed very comfortable with the technology and we were amazed at their ability to hear and to speak (very clearly).

Even though we weren’t prepared for Kate’s diagnosis of profound hearing loss, we had been trying to prepare ourselves. We had researched cochlear implants and had decided we wanted Kate to have cochlear implants if that was a choice for her. We also understood that even with CIs Kate would always be Deaf and we should start learning about and exploring Deaf culture and make a more concerted effort to learn American Sign Language and teach it to Kate. We began to slowly switch gears and look into resources available to us. Kate’s infant hearing program teacher began to use more sign language with Kate, we fitted Kate with the most powerful hearing aids available so that she would have access to some auditory stimulation, and Kate’s auditory verbal therapist added sign language into our sessions as well.  I reached out as best I could to the hard of hearing and Deaf community, looking for other children like Kate, looking for Deaf families to interact with. I was very surprised at how hard it was to find the resources I was looking for, there seemed to be really nothing available to support very young children of hearing families who were Deaf. Despite all the support from therapists and audiologists, we felt very alone.

Children who are interested in having cochlear implants also must undergo CT imaging to ensure that the structures of the inner ear are of normal shape and size in order to undergo the surgery. The CT image also acts as a guide for the surgeon performing the CI surgery as he inserts the device into the child. Kate underwent another general anesthetic only a few short weeks after suffering her last acute episode, which we now know was triggered by the general anesthetic from her BERA. My instinct was telling me that Kate should not undergo this procedure, that she was not yet recovered and close observation would be required. I even asked that she be admitted for observation for 24 hours in oder to ensure her body would recover well from the GA. I blame the lack of coordinated care for Kate within CHEO for not being heard and for the event that would follow. Kate had a an acute life threatening event due to the GA and ended up in hospital again. Several weeks later, with meetings among her entire medical team – it was determined that Kate should not undergo any general anesthetic procedures unless absolutely necessary. Cochlear implant surgery scheduled for that spring was cancelled.

We were left in a strange place of limbo and isolation with Kate. We were a hearing family, we knew no Deaf families, and we had a profoundly Deaf child. Although we wanted cochlear implants for our child and the opportunity to hear, we weren’t sure that would ever happen for Kate.

I started to immerse myself into learning as much as I could about having a Deaf child. We made connnections through the Ottawa Infant Hearing Program to access a tutor to learn American Sign Language (ASL) for Brian and I. We hired a tutor for Jack to learn ASL and Kate was connected with her preschool teacher for the Deaf and her auditory verbal therapist. I enrolled in ASL classes – which I continue to this day, and I contacted local and national organizations for Deaf and hard of hearing children; VOICE, the Canadian Hearing Society, Hands and Voices, Deaf and Hard of Hearing Society, and The Canadian Associate of the Deaf.

I slowly began to learn that though there were many resources, very few were targeted to young children. Our focus became on learning ASL and on communicating with Kate as best we could using gestures, facial expressions and teaching her to sign. As we delved further into Deaf culture, we also became very aware of the strong value that culturally Deaf adults placed on children who are born Deaf or become Deaf at an early age. These children are truly considered culturally Deaf and there is much controversy about the language that should be made availalbe to them and the use of technology in offering them the opportunity to hear.

Over the summer of 2010, Kate’s medical team considered many possibilities in performing a general anesthetic for Kate. There was some talk about scheduling a ‘trial’ anesthetic to try out a new protocol of drugs that might be more successful and have less of an impact for Kate. A second CI surgery was scheduled for October 2010, and the medical team went about developing a plan. There were many medical consultations and meetings about risks and benefits – but in the end no one could give us a comprehensive position on what the risk was to Kate. What everyone did agree on was that the shorter Kate was under a GA, the better. The team thought we might want to pursue only 1 cochlear implant rather than go for a bilateral surgery – which was not the typical surgery done at CHEO. The idea was a shorter surgical time – get in and get out – and perhaps we could try for a second CI at a later time. However, all the research that I had done told me that bilateral hearing with CIs was the optimal scenario and if we were going to do this for Kate, I wanted the best.

I began thinking more about Kate’s surgery and I still felt very unsettled about the process. The surgery would be close to 8 hours in duration (for bilateral surgery), and my instinct told me that this just wasn’t possible for Kate, and I was less interested in splitting the surgery into two different stages. I began to research CI surgery on the internet and that is when I ‘discovered’ Dr. Papsin, a CI surgeon at Toronto Sick Kids Hospital. Dr. Papsin was world renowned. He was highly respected and he was a very efficient CI surgeon. Bilateral surgery was one of his specialties, and it was his philosophy as well that bilateral hearing was best. So I emailed him. I briefly introduced myself and I told him a little of Kate’s background. About thirty minutes after I sent that email in September 2010, Dr. Papsin called me at home. We had a great conversation and the end of which, I felt a new sense of possibility for this surgery and that Dr.Papsin could do this and keep Kate safe.

Quickly the wheels starting turning for us to go to Sick Kids and meet the team, including a prominent anesthesiologist who would weigh in on Kate’s case and determine if he felt this could be done safely from a GA perspective. CHEO facilitated the sharing of medical information, documentation and scans – and Kate’s CHEO physicians were instrumental in ensuring the Sick Kids Team were properly briefed on Kate, and I was impressed at how well these 2 major pediatric centres worked so well together.  The CHEO surgery was cancelled and in October 201o we travelled to Sick Kids to meet the team there.

We met Dr.Papsin first. He was all bluster and confidence, and his very direct answers to our questions and concerns set us at ease. He was confident that this could be done for Kate and he advocated strongly for a bilateral procedure. He told us this could be done in under 4 hours! Half the time that was anticipated at CHEO – and simply a matter of a different surgical technique.

The next step was anesthesia, Dr. Jamie Robertson was very prepared to speak with us having been well briefed by the team at CHEO, and Kate’s pain management and palliative care physician Dr.S. Dr. Robertson took on the challenge of Kate’s case as work of basice research. He returned to the basic of his specialty, and rather than relying on current methods that were standard, he worked out an individual formula for Kate of a drug cocktail that he felt would be less intrusive on her body. He reviewed how Kate would be monitored during the surgery and the emergency plan they would put in place to get Kate out of surgery quickly should things not go well.

Together, Dr. P and Dr. R devised a post-op plan that included placing Kate in intensive care for 24 hours, followed by critical care for another 24 hours. Both would provide constant monitoring and be the safest way for Kate to recover from her surgery.

On November 7th, 2010 Kate was prepared for a bilateral cochlear implant surgery. She was admitted the evening before and placed on IV hydration and glucose pre-surgery, this was to mitigate the fasting required before the GA. She was also put as the first case of the morning, to ensure she did not fast too long. We met the team in the surgical waiting area. The entire team was present as Kate as sedated. Dr. Papsin introduced us to his team – he often referred to his residents as his ‘elves’ who did the ‘messy’ work. He told us they would close Kate up and he’d be back to check on them after. We took this as part of our impression of Dr.P as all bluster and confidence…and then he did something that melted my heart. He told us he had invited a ‘special’ team member to be with them for Kate’s surgery. He told us she was his good luck charm, and that he wanted her there for when Kate underwent her surgery. His good luck nurse was his wife – a cardiac nurse who had taken the time from her service to be with her husband and support him professionally for this special little girl. Wow.

Brian gowned and masked, walked with the team into the surgical suite to hand Kate over. Only one parent was allowed to go, and I just couldn’t do it. I had come this far, I was as prepared as I could be. I had set everything up as well as I could to keep her safe, but I couldn’t be the one to hand her over to the team – what if something went wrong.

The next 3 hour and 47 minutes were the longest of our lives. Dr. Papsin had told us 3.5 hours, and as the 17 minutes ticked by beyond the time frame he had told us, I started to pace. When Dr.Papsin walked the corridor from the surgical suite toward the waiting room, I was leaned over the balcony crying. “Why are you crying?”, he asked. “My elves are stitching her up now, all is well”. (I soon found out after that Dr.P himself had done every stitch – which was unusual according to his senior resident. He never left Kate. So much for all that bluster.)

Relief. Gratitude. Respect. Hope. And a million other emotions flooded my eyes. I was so happy, yet I knew there was much more to come. It was after the GA where Kate had issues.

Kate had a great deal of difficulty waking from the GA. She was in pain and the nurses hadn’t found her soother. They came to find us quickly as they were worried about her since they could not calm her down. She soon took comfort in Brian’s arms, and we settled into a 48 hour routine of 2-3 hour shifts of sleeping in her room and sitting with her in the PICU.

Kate recovering from CI surgery.

Though Kate’s initial recovery at Sick Kids went well, in hindsight, we left the hospital too soon, a mere 72 hours after her surgery (typically a day surgery). Kate did not do well on the drive home and she ended up hospitalized at CHEO for several days once back in Ottawa. Her body needed a little more support for a little longer, but we felt overjoyed that she had come through an almost four hour surgery and done relatively well.

Kate’s CI surgery sites healed well and in mid-December of 2010 her devices were activated for the first time. It is quite a moment, and often captured and shared by many families on video. Our was as well http://www.youtube.com/watch?v=3RNE8vJ3L3o&feature=g-upl

I have never regretted our decision to give Kate cochlear implants. Today she is hearing, she understands when we speak to her, and she is showing very early signs of ‘words’. I have embraced her as a Deaf child/person, and I am ensuring that ASL is part of her ability to communicate, and want to build for her a Deaf community of friends and mentors. We are getting there slowly but surely and I so grateful for the wonderful friends, mentors, and teachers I have met along the way.

 

Julie

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