School Package Released!

Hi everyone! 🙂

With school just around the corner for many of our young ones, we wanted to share with you a new resource that we have developed! The school package (available here) is a great resource to help explain esophageal atresia/tracheoesophageal fistula and your child’s support needs to school staff. We would like to encourage you to edit this template to suit your child’s needs before sharing it with the staff at your child’s school.

A very special thank you to Shauna Marques whose school letter formed the basis for the initial draft, and much of the final version, of this package; we are incredibly grateful!

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3 Things to Look for When Choosing a Pediatrician

Your child’s pediatrician will be one of the most important members of his/her healthcare team.  They will be the gatekeeper to care from other specialists and will develop a relationship with you throughout your child’s development.  As such it is important to make a careful choice when choosing a pediatrician.  These 3 traits are the most important when choosing a pediatrician:

1.) They Have Time for You!

Physicians are busy professionals but high quality physicians will not let their schedule limit the amount of time they spend with you and your child.  This is important as children with esophageal atresia and tracheoesophageal fistula have complex medical needs that require adequate attention and time for the physician to adequately assess and understand how to improve or maintain your child’s health.  While they may make you wait while spending time with other patients, a physician should not cut your appointment short in order to maintain their schedule.  They should always prioritize their patients!

2.) They Listen to Your Concerns!

A positive physician-patient relationship is collaborative!  As part of a positive, collaborative relationship, you must also be able to voice your concerns and share your experience and opinions with your child’s physician.  Although you may not always agree with one another, it is important that the relationship between you and your child’s physician allows for a mutual discussion of ideas related to the care of your child.  This ensures that your child’s care will be truly patient-centred.

3.) They are Knowledgeable about Esophageal Atresia/Tracheoesophageal Fistula!

This can be hard to find.  Many physicians are inexperienced in dealing with these congenital anomalies because esophageal atresia and tracheoesophageal fistula only occurs in 1 in 5500 Canadian births.  If you can find a physician with experience with patients with esophageal atresia and tracheoesophageal fistula, don’t let them go!  Two important questions to ask any physician without experience dealing with esophageal atresia and tracheoesophageal fistula are “Are you comfortable in having my child as a patient?” and “How will you ensure you’re providing my child the best possible care?”.  If they are uncomfortable caring for your child or unsure of how to learn about their congenital anomalies, it is best to find another physician.

Bonus:

4.) They Don’t Plan on Retiring

This can be tricky.  Often those physicians that are most experienced with esophageal atresia and tracheoesophageal fistula are also the most senior.  Because your pediatrician will be a central part of your child’s healthcare team throughout their childhood and youth, it is ideal if that physician remains the same throughout those years.  This continuity provides many benefits including an improved relationship between yourself/your child and the physician, and a more complete monitoring of your child’s development by the physician.

 

Getting Started:

Make an appointment with pediatricians prior to your birth or soon after and feel out their knowledge and attitude to see if they are suited to your child’s and your family’s needs.  This may take some effort but I assure you that in the long run it will be worth it!

Note: Some families choose to have family doctors or general practitioners instead of pediatricians for their child’s health needs.  If this is the case these traits are still important to consider when choosing a family doctor or general practitioner.

-Quinten

On Father’s Day

The rather pale-looking photo attendant informed my father that he had called the first aid attendant and that she was on her way.  My father, stoic and calm, perhaps too-calm given the situation, thanked him and continued to encourage me to cough.

And I coughed and coughed and coughed.  Loudly and seal-like, I coughed.  Other customers turned to see what was happening, curious to examine this domestic emergency.

I was choking.  Or at least pre-choking, what many parents like to refer to as a “stuckie”.  I had taken a bite of a Costco food court hot dog and, in attempting to swallow it, found that my esophagus felt that this bite was too big.

This was not the first time this had happened nor was it the last.  I was born with esophageal atresia, a congenital anomaly where the top portion of the esophagus does not connect with the stomach.  In my case, and in most cases of esophageal atresia, this diagnosis included a trachea-esophageal fistula.  Tracheoesophageal fistula is a related congenital anomaly where the trachea (windpipe) is attached to a portion of the esophagus, in my case the upper portion of the esophagus.  These anomalies requires surgery soon after birth and results in a narrowing of the esophagus which makes me prone to choking.  My father knew all of this.

And there he was, my first-aid trained father, with the beginnings of a grin on his face.  And I was coughing but I may as well have been laughing.  Because it was silly and my dad was so confident that I was going to be fine that nothing bad could have possibly happened.  Those things happened to other people not kids on a day out with their dad to Costco.

Rather undramatically I swallowed. I felt the bite go all the way down into my chest; an unpleasant, familiar, somewhat painful, feeling that was enough to bring tears to my eyes.  But alas that was the end of that.

I tell this story for two reasons.  One because so many families have similar stories of their children with esophageal atresia/tracheoesophageal fistula getting food stuck in their esophagus while eating.  It is common and it is scary.

And two, because all these years later I realize that he was probably scared.  Scared when I was born and unable to breathe, scared when I had to have surgery, scared when I was choking on a hot dog in Costco.  But despite being scared he remained strong, and was always there to reassure me, to care for me.  I tell this story as a way of apologizing for all the grey hairs I caused him.  I tell this story to wish him, and so many dads like him, a Happy Father’s Day!  But most importantly, I tell this story to say thank you for all he has done for me and continues to do for me.  I am a better man because I have him as a father.

-Quinten

Watch your language!

“Birth defect”.  You won’t find this word anywhere on our site except in this article.  Some of you may be wondering why.  There is a good reason I promise.

The reason that the term “birth defect” is not used on our website is because of its negative connotation and interpretation.  This term implies that individuals who are born with the conditions grouped under “birth defects” are defective.  This is simply not true and reflects a dated understanding of our condition.  Like so many other politically-incorrect medical terms, this one should also be removed from our vocabulary because, whether we admit it or not, words hurt.

For this reason, esophageal atresia and trachea-esophageal fistula have been referred to as “congenital anomalies” on our website.  This term has a more positive connotation that suggests individuals living with these conditions have anomalies that are present from birth.  This term is more positive as it implies that individuals with these conditions are unique, different or peculiar but certainly not defective.

And so I ask that the next time a friend, a family member, a physician or even a stranger refers to someone as having a “birth defect”, take the time to correct them and educate them about why this term is no longer acceptable.  Little by little we can change the language used to describe people with esophageal atresia and, in turn, change the way people perceive us.

-Quinten

On Storytelling

“[T]he story of a mother having a baby [with] esophageal atresia is so heartbreaking”.

This is a tweet I came across this week while using the CEAN twitter account.  It angered me.  And then I thought about it.  What did this tweet say about the mother?  What did it say about the child?  Was I overthinking it?

Yes, certainly there are difficulties with being a child with esophageal atresia. Certainly there are difficulties associated with being a parent of a child with esophageal atresia. No, mum or dad after spending weeks in the NICU will suggest that it was an enjoyable experience.  But is it heartbreaking?

Many of us on this page and, who I’ve had the chance to exchange stories with since starting CEAN, have tremendous tales of perseverance and strength. To suggest that our stories are heartbreaking, or that the only aspect of our stories that matter is the heartbreak, is to deny the many joyous parts of our lives.

This tweet made me think that perhaps if we were able to share more of our stories with one another and with the world then we would be able to change this perception about our lives. In that sense, CEAN is relaunching the blog portion of our website (canadianeanetwork.org) to showcase stories, trials and triumphs of people with esophageal atresia/trachea-esophageal fistula and their parents. Perhaps instead of seeing these stories as heartbreaking we could see them as heart-bending; instances where we may have been hurt, anxious or distraught but which, ultimately, we overcame.

Will this change perceptions?  I don’t know.  But we can try.

-Quinten

15-16 September 2016 – 4th International Conference on Esophageal Atresia

On behalf of the Organising Committee, it is my great pleasure to invite you to attend the “Fourth International Conference on Oesophageal Atresia”, which will be held in Sydney under the auspices of the Sydney Children’s Hospital Network, in September 2016.

Oesophageal atresia is the most common digestive malformation. Since the first successful primary repair in 1941, postoperative outcomes have changed. With improvements in operative and peri operative care oesophageal atresia
is no longer a neonatal surgical problem. Gastroenterological, respiratory, otorhinolarygological and nutritional issues are prevalent not only in early childhood but also in adolescence and adulthood.

The conference in Sydney like the previous meetings in Lille, Montreal and Rotterdam will be a multidisciplinary conference and aims to bring together experts from around the world, involved in the care of atresia patients, under one umbrella. One of the aims of the conference will be to foster international collaboration and research in the field of oesophageal atresia.

The conference in Sydney is supported by not only the International network of Esophageal Atresia (INoEA) but also by parent support groups not only from Australia (OARA) but around the world including EAT from Europe. We welcome this opportunity to connect and collaborate with clinicians, academics, researchers and support groups across multi-disciplines from within our region and beyond.

Sydney is Australia’s oldest, largest, most cosmopolitan and exciting city. It has natural beauty, inspiring arts and  culture, a dynamic dining scene, exuberant spirit and near perfect climate. Easy to get to and easy to get around! We
offer the warmth of our magnificent city, graced with iconic landmarks and reflected in the world’s finest natural harbour. Come explore Sydney, the gateway to Australia.

We look forward to seeing you in Sydney in 2016 for the “Fourth International Conference on Oesophageal Atresia”.
Dr Usha Krishnan
Paediatric Gastroenterologist, Sydney Children’s Hospital
Chair of the Local Organising Committee for the Oesophageal Atresia Conference in 2016

Source: 15-16 September 2016 – 4th International Conference on EA – The Federation of Esophageal Atresia and Tracheo-Esophageal Fistula

Medications Are Expensive!

As many of you likely already know prescription drugs can be quite expensive. If you are lucky enough to have them covered under your employment benefits or extended medical then disregard the rest of this post; however more likely than not a portion or the entirety of the cost is paid out of pocket.

Some strategies to save money on prescriptions can be to request generic drugs as opposed to their brand name counterpart (i.e. Omeprazole as opposed to Prilosec). The generic versions are often cheaper however if the drug is relatively new this is typically not an option. Secondly, it is possible to reduce the cost through minimizing dispensing fees through the purchase of larger quantities of a drug or by simply filling prescriptions at a pharmacy with lower dispensing fees. Finally, some pharmaceutical companies and non-profit organizations offer financial support to those struggling to afford medication. Any other suggestions?