who we are

Cohen Rothery

Cantius

 

We have been informed that we are to receive a donation from the Sarah Faith Hogan Foundation, due to the unfortunate situation our family recently found itself in as a result of the birth of, and subsequent complications with our first born son, Cohen. Below is an account of our story, and how it has affected our lives.

My name is Aaron Rothery. My wife Rachel and I had our first child on May 13, 2010. Cohen was born at 41 weeks following a very long and difficult labor spanning nearly 2 days. It was an uncomplicated and uneventful pregnancy.

Cohen was born completely flat, limp and blue requiring immediate and prolonged resuscitation. Although Cohen still appeared weak and would not cry or open his eyes, we were assured all would be fine. Later that evening Cohen became increasingly irritable while trying to feed, and was eventually taken to the nursery.

I had left the hospital that evening, and awoke hours later in the night to a phone call from Rachel explaining that Cohen had been taken to the NICU and placed on a ventilator. He had been having apneic spells (not breathing) and turning blue in the nursery. It was later determined that he was actually having seizures secondary to swelling of his brain, causing his lapses in breathing.

For the first day or two it was unclear whether Cohen’s condition was a result of an electrolyte imbalance following difficulties with Rachel’s labor, a bleed in Cohen’s brain, or something called Hypoxic Ischemic Encephalopathy (HIE). HIE would be a result of a diminished blood flow to Cohen’s brain for a period of time at or shortly before the time of delivery. HIE would eventually be Cohen’s primary diagnosis.

Cohen’s brain swelling and seizures remained virtually unmanageable for the first few days of his life. He went on and off the ventilator. It was in this time that we were told about Cohen’s likely prognosis associated with a successful discharge from NICU. Prior to discharge however, the swelling in the brain would have to subside. Next, the seizures would need to be kept under control. Cohen would then need to demonstrate that he could cough adequately and breathe on his own.

Over the first 2 weeks of Cohen’s life in the NICU, the swelling in his brain subsided and he began to breath on his own and even feed adequately. Cohen continued to seize at times for the duration of the first 2 weeks. Cohen’s brain MRI and physical assessment results were indicative of a poor long-term prognosis.

Essentially, Cohen is, and will always be significantly disabled both mentally and physically. Just minutes prior to his discharge we were also told that he might also have significant visual problems as well (which he seems to). It is difficult to describe how disheartening it is to leave your child at the hospital in that condition each night the first weeks of their life, in that condition. You feel helpless and inadequate as a parent. While we always imagined that the drive home from the hospital with your first child should be one of the most exciting moments of your life, ours unfortunately was overwhelmed with uncertainty and fear with regards to our family’s future, and one we often wish to forget.

Cohen’s first year has been full of realizations as to the reality of his condition. For the first few months, Cohen would not look to his right, at all. The spasticity (tightness) Cohen has in his trunk and limbs was obvious to us from early on, especially on the right. Cohen (still) will only really grab or move in any sort of deliberate way with his left hand in largely uncoordinated ways. His microcephaly is severe (far below 1st percentile) and is a direct reflection of the lack of growth in his injured brain. Unfortunately, Cohen’s predisposition to look to the left and lack of head growth mean that even a shaping helmet will not correct his plagiocephaly (mis-shapen head). Cohen has not met almost any milestones aside from rolling over.

Cohen is now 1 year old, and is one of the happiest children anyone has ever seen. He sleeps well and adjusts well to new places. We have even traveled overseas for prolonged periods of time with him. So far, feeding has gone well although his future in this regard is now uncertain. Our friends and family are quick to point out how lucky we are for all these things, and indeed we are grateful. However, this is not the whole picture.

Cohen is currently diagnosed with HIE, severe microcephaly, (possible) cortical visual impairment, plagiocephaly, sensory integration disorder, Global Developmental Delay, and Dyskinetic Cerebral Palsy, specifically spastic quadriplegia. He is currently followed by neurology, ophthalmology, audiology, neuromotor clinic, infant team, head shape, feeding team, physical/occupational and speech therapies. Cohen currently receives support from AADL and FSCD in addition to Alberta Health. Cohen currently has Ankle Foot Orthotics (AFO’s) to prevent shortening of his tendons and subsequent future surgeries. He also has wrist splints that act to keep his thumbs out of his fist. Hopefully this will enable him to eventually learn to grasp objects more effectively, and having them open as opposed to fisted will hopefully provide feedback while weight bearing that will teach him that he actually has arms and hands.

Currently, Cohen makes almost no deliberate or purposeful movements with any of his limbs. While he does bring his (left) hand to his mouth, and both hands are able to open spontaneously, he does not actively reach for toys, and does not purposefully or deliberately move his arms or legs, especially his right arm. He will, however, cycle his left hand from his lap to his mouth and even grab at a toy or food put in that range, however becomes indifferent to items when out of this reach. If propped sitting, he will on occasion reach in the direction of a toy, although this is infrequent and he will not do this if required to reach up at all. Although Cohen does on occasion hold onto toys or food, he has very little gross and less fine motor control. He actively fights any practice of use of his arms. Cohen cannot sit, or bear any weight on his arms. In fact, Cohen lacks proprioception, and as such is largely unaware of his own body and thus its interaction with itself or environment. He drools excessively and gazes to the left and downwards nearly all the time. Cohen does not babble or interact or engage appropriately for his age. He is most content to lie on his back, where he wiggles with uncoordinated / dyskinetic movements for as long as you allow him. While he appears to react positively to familiar voices, he is just recently becoming more able to accurately or reproducibly visually locate the source. While he will focus and follow, it is infrequent and for very short durations. Cohen has a very, very high pain tolerance common to children with his injury, which will become more and more dangerous as he becomes older and stronger. Cohen also has no protective reflexes, meaning due to his lack of proprioception, he will not attempt to stop himself from falling.

The unfamiliarity with and vagueness of Cohen’s primary diagnosis of HIE make communicating his prognosis and acquiring appropriate funding and treatment difficult. Cohen essentially is diagnosed with a brain injury. This lacks the specificity often required to receive entry to (and sometimes funding for) programs such as Occupational and Physical therapies. Indeed, Cohen’s condition did not technically qualify him for recognition from the Sarah Faith Hogan Foundation.

We have also found that the programs here in Alberta for children such as Cohen are severely inadequate in what they do provide. Where Cohen qualifies for approximately one appointment per month with Physical Therapy and Occupational Therapy, this did not begin until he was 6 or 7 months old, and only did so because we were leaving the country and insisted he be seen prior to our travel. The program providing these services (Infant Team) here has been without an Occupational Therapist and as such, Cohen has only received 2 Occupational Therapy appointments in 1 year from this service covered by Alberta Health. In researching other places in North America and elsewhere, other children like Cohen have a full team of OT, PT and Speech follow them from as early as 1 month old and 3 or 4 times with each service per month.

Due to the ridiculously inadequate services provided here in Alberta, we have pursued private services to help Cohen. We have found a wonderful Physical Therapist and have been searching for an Occupational Therapist and Speech Therapist for some time. We have also found that Cohen loves the water, and this is actually a very good therapy for his tightness and spasticity. We have endlessly researched and purchased many toys and most importantly, therapy based equipment to help Cohen’s physical and mental development.

While doing the paperwork and booking the follow up appointments necessary for program admission and funding is frustrating, it is often the inability to communicate his actual condition and his (and our) subsequent future that is most difficult. When friends and family see how happy he is, they immediately remind us how lucky we are. When they see him look at them, or appear to use his right hand, we’re told how much better he is doing. If he is seen to bat at a toy with his left hand, it is assumed that he does this accurately and reproducibly. When they see a picture of his contagious smile, they don’t realize that it took 30 pictures to capture the one where he was actually looking up.

Unfortunately, when you are with Cohen for longer than short visits, you quickly appreciate just how behind he actually is. We do notice and appreciate all the small gains in Cohen’s development, as they generally come following tireless efforts. We all hear parents all the time talking about their child’s development – when they sat and when they walked, etc. I am confident that we have worked more in the past year to try to help Cohen look to his right, or hold his thumbs out when he makes a fist, or try to reach for a toy, or not shake his head uncontrollably than most parents would need to have put into teaching their child to sit, stand, crawl and/or walk as this would eventually come naturally to most children. Unfortunately, despite all our efforts, even these small things we have worked so hard for have still not developed. As for sitting, standing, crawling, speaking or walking that children Cohen’s age are expectedly doing, he may never reach these milestones.

Rachel only took 8 months of Maternity Leave and has been working nearly full time since. I would estimate that she has herself invested more hours in the past year (over and above work and looking after Cohen as all parents do) researching everything for Cohen, than the rest of us put into a full time job in a year. In addition to regularly speaking to other families online with children with similar conditions, Rachel has also recently set up a new support group as well. It is difficult to convey how frustrating, overwhelming and disheartening it can be as a parent to do everything in your power to help your child all day every day on such seemingly normal (and otherwise expected skills), and see only very small or no improvement at all in return.

We necessarily have to understand what Cohen’s prognosis means for our family in the future. Cohen does not have a disease that is awaiting a cure. He has an injury that cannot be reversed. Time does not heal this injury, but merely reveals the severity. While his future is characteristically uncertain, this does not mean that everything is still possible for Cohen, and unfortunately us as a family. Indeed, although Cohen continues to progress developmentally, every day he becomes exponentially further behind his peers. He will never catch up and in fact, will never become closer developmentally to his peers.

The reality is that Cohen may never sit, stand, crawl or walk on his own or at all. Although it may be possible that he develops the ability to speak, it will very likely never be in the form of an intelligent conversation. The lack of gross and fine motor skills in Cohen’s arms and hands mean that even appropriately reaching for and grasping an intended object could prove very difficult. It is impossible to accurately determine the level of Cohen’s mental delays at this point, but it is obvious that he is very significantly behind where he should be for his age. Aside from not having the physical abilities to even play with a toy, Cohen’s lack of awareness of both himself and his surroundings is of great concern, as this is the basis upon which those other skills develop. For instance, children learn to grab at toys for cause and effect rewards, and learn to crawl in response to wanting a toy or object out of their reach. Lacking the awareness of these things in the first place, significantly reduces the drive to further (or begin to) develop his skills.

It is important for us not only to recognize that Cohen will be significantly delayed, but what that effectively means for our growing family (Cohen’s brother is due when Cohen will be 16 months old). Cohen will never be independent – he will in all likelihood require 24hr care for his entire life. His limitations will prevent him from doing obvious things, such as playing sports, but also everyday things we all take for granted. His demands will also put significant demands on our resources as a family, and will affect his future siblings as well.

Consider the skills and dexterity required for brushing your teeth, getting (or even holding) a glass of water, getting dressed (buttons and zippers, even pulling your shirt over your head) or using the washroom. Even if Cohen develops the mental capacity to communicate in a meaningful way, it is unlikely he will ever have the dexterity to operate a pen, or accurately type on a keyboard. It is very likely that Cohen will never be able to do these things or so many other everyday skills for himself that we take for granted. That means that we will need to provide everything for him, all the time. It is one thing to say or hear this, but we can assure you, to write it knowing how it applies to you has an overwhelming impact. We will never play hockey or golf with Cohen. We will likely never teach him to read or do math, at least not a reasonably high level. We will never teach Cohen to drive, and may never see him graduate or even attend ‘normal’ school at all. It is very likely that Cohen will always be in diapers. When this is your child, this list grows every day as you come to realize how much of what you always expected is truly unlikely. While we hope every day that everything is still possible, all of our extensive research and the professional opinions of so many health care professionals familiar with such injuries are very cautionary. We hope that we are ultimately completely incorrect with the future that we are necessarily currently preparing for. Indeed, we are doing everything we possibly can to aid in Cohen’s development.

Already, we have recently calculated the extraordinary costs of raising Cohen over and above the costs of raising a normally developing child as being significant. (This is actually a necessary task when researching and applying for various funding and tax implications). In addition to the thousands of dollars we have already spent on special equipment for Cohen, we have no choice but to continually pay for private therapies as well. Recently, Cohen has fallen off with his weight due to feeding attention, which is not an abnormal development for a child with his injury. Thus, we are now supplementing his diet with special foods and a significantly increased cost. Childcare for Cohen is extraordinary in both availability and cost. At 1 year old, he cannot sit, hold a bottle or food, or even play by himself. There are limited childcare options and require approval from FSCD for aid services to necessarily be with Cohen at all times. While we can attach a numeric value to the actual costs associated with equipment and services, we cannot do the same for the time going to all of Cohen’s appointments, or the research involved in everything we do for Cohen.

The emotional toll of raising Cohen is significant. While there are some great moments, and we love Cohen unconditionally, working and playing with Cohen can be overwhelmingly frustrating. It is difficult to describe the emotions that emerge from trying to help your child to accomplish the most seemingly simple tasks. Trying to help him open his hand to grasp something, even trying to make him aware of an object in his visual field in the first place, all while he is physically struggling and making little to no progress over time. Working on his daily stretches, or trying to help him sit while he constantly fights to work his way onto his back, where he will wiggle and stare into space for as long as you allow him, ignoring all toys or other stimulation you provide. Attempting to feed him for extended periods of time as he shakes his head and arms in uncoordinated and non-deliberate or purposeful ways, knowing that if this continues, there is a possibility of the need for a G tube or NG tube. Indeed, Cohen crushes both of us regularly in such ways and it’s unfortunately not uncommon to have multiple breakdowns every week. I compare raising Cohen with his injury to my time in University, where I balanced full time studies with near full time employment. Aside from the actual time and physical demands required, university always meant that you had a test, a project, or assignment in the back of your mind, which can be taxing. With Cohen, while we are constantly focusing on the next playtime, task, appointment, etc, the reality of the implications of all Cohen’s disabilities is always inescapable and overwhelmingly present.

We can unfortunately only imagine what it must be like to look back and remember with great affection the day your first child was born. It is regrettable that the first two weeks of Cohen’s life is a time that is both blurry, and a time we would often rather entirely forget. Indeed, looking towards the birth of our second child is now understandably filled with much more caution than excitement. It must be wonderful to have kept intact all of the dreams you had previous to your child’s arrival, and watch and enjoy as they develop as expected, and indeed sometimes exceed expectations. To play with your child for the pure enjoyment, worry free, as opposed to (necessarily) continually trying to work on their limitations. To know that if you try to have your child progress to the next milestone, and they don’t make it at this time, that they eventually will. To look forward to watching your child succeed through school, play sports, drive, date and get married and have children.

Our dreams have changed to hoping that Cohen will be aware enough of his own body to close his eyes and be able to pass something from hand to hand, or bring a cup to his mouth in the dark, if he is ever able to grasp objects effectively in the first place. We hope that he will have an understanding of who we and the rest of his family are, and possibly communicate with us (likely through a communication device of some kind) if even in the most basic ways. It seems that others are often quick to romanticize such situations, and remind you of how you learn to appreciate the ‘simple’ things, such as Cohen’s heart-melting smile. People tell you how all the things that will limit Cohen don’t matter if he’s happy, and that you learn to love a child with special needs “differently”.

All too often these words of wisdom come from people who have never interacted with special needs children in a meaningful (and prolonged) way. Not having had the chance (yet) to raise a normal, healthy child, we would never make such a claim comparing how it relates to raising a child with special needs. Even if we could, would not suggest that our experience would be the same as another families in similar circumstances. While yes, you do learn quickly how much we always took for granted in both ours and our families development, people quickly forget that as much as we then appreciate the work and patience involved in waiting possibly years (if at all) for Cohen to sit for example, other families have enjoyed countless other developments in addition to still using the sky as a limit for the future. As for that heart-melting smile, when that is your child, in addition to melting your heart, it very much breaks it at the same time. We will always be supportive and proud of everything that Cohen accomplishes, and forever hope that it is much, much more than we dare to dream at this time.

The donation granted by the Sarah Faith Hogan Foundation will go towards the extraordinary costs we have thus far incurred in special equipment and therapy sessions, and those going forward. We are very grateful to receive such a generous donation, especially since Cohen’s condition did not automatically qualify him (as has been the case for so many things) for this donation. The reality of situations like ours is that anything that can be done to alleviate other concerns, thus allowing you to focus directly on your family is greatly beneficial. Unfortunately, we do live in a time and place where financial stability is very important, especially when you are directing all of your resources to a child in need. For the first few months following Cohen’s birth, I took a leave from work and thus we lost some of the financial stability we were used to and expected. We have both missed work since due largely to Cohen’s relentless appointment schedule. Donations like this enable parents like ourselves to continue to worry first and foremost for our child, as opposed to figuring out how to necessarily work more (at the expense of our child) to continue to make ends meet. In our case, there have also been significant costs associated with equipment as well.

We thank all of those that donated to and have otherwise supported this foundation and can assure you, that while we greatly appreciate it, all future families will also surely benefit as much as we have.

We wish everyone else the best, and cautiously look forward to the birth of our second child. Thank you all.
Aaron, Rachel and Cohen Rothery

 

2014 Update

 

Cohen is 3.5 years old now, and our family has grown and changed since our last update. Cohen now has two little brothers, Bennett (2) and Cameron (4 months), and we have recently moved to a more accessible home to accommodate Cohen as he grows.  Cohen's list of diagnosis seems to grow more each year - a short list of which includes Cerebral Palsy, CVI  (Cortical Vision Impairment), microcephaly, movement disorder, global developmental delays, and possible Autism Spectrum Disorder - though these diagnosis certainly don't define him, they are necessary to get the services and supports that he and our family requires. 

 

Although Cohen remains significantly delayed in all areas of his development, we have seen some big changes this year which have given him some more independence, and a bit of a break for mom and dad. He is now recieving PUF (Program Unit Funding) and is registered with the GRIT Calgary Society, who coordinates his preschool programming and supplies Cohen with an aide to accompany him to our community preschool, and supplies excellent therapists and equipment to help him reach the goals we have set for him. He's making some great strides, including "bum scooting" as his primary mode of mobility, in addition to continuing to enjoy his walker and using it in the house to chase his little brother around. 

 

Cohen has become very adept at communicating what he wants, despite being unable to talk, and has perfected the art of the tantrum.  We are currently working with his school to develop a way for him to communicate with us better, as its obvious he understands much of what we say, and we are excited to uncover a way for him to convey his wants, thoughts and feelings in a more productive way. Cohen's favorite things include music, swimming, ice cream, and his mom (we've got 3 momma's boys in this house).  

 

Nothing could have prepared us for the sleep deprivation, worry, financial strain, stress, coordination and research that comes along with being Cohen's parents, however, without the support of organizations like the SFHMF, Cerebral Palsy Association of Calgary, and a number of other non- profits and government agencies, we'd likely never be able to come up for air and enjoy all of the amazing parts of life with Cohen and our other kiddos. We are eternally thankful to those who continue to volunteer and donate to these charities, as they are such a lifeline for families like ours.

 

Cohen Rothery

 

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Sarah Faith Hogan

november 8, 2004 - january 22, 2006

The Sarah Faith Hogan Memorial Foundation was formed in loving memory of Sarah Faith Hogan and is dedicated to the selflessness and courage of Sarah’s grandfather and mother, Chuck and Cathy Hogan.

 

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