The 31st Annual IWK Telethon for Children on CTV will broadcast live May 30 & 31, 2015!

HKBK: Helping Kids Be Kids will be presenting a portion of the funds they've raised throughout the last year to the telethon! The youth are also still doing more fundraising events and look forward to participating this year as well!

The photo above is almost a year old! A beautiful Spring day in May 2014 gave HKBK youth a terrific opportunity to go out into the local community with donation boxes to canvass for financial contributions. Pictured here are two of our members, Carly and Katie with a couple travelling from the United States who gave their permission for us to use their photo. It was really exciting for the kids to not only meet a couple from another country on the grounds of the IWK Health Centre but also to get a donation in American money - quite exciting for younger folks ;-) 

 

This photo, taken by one of the HKBK youth, of a piece of art at the hospital is indicative of why the phrase "a picture speaks a thousand words" is so true. Or in this case, it speaks one word that means so much. HKBK's efforts, when one comes down to the bottom of it, is all about love. Loving others through actions that help others, show kindness and compassion to others and solidify a sense of community and purpose for all. We're all very excited as we quickly approach the 31st annual telethon.

 

This photo shows two of our dedicated HKBK youth decorating the poster for last year's presentation on television. While our group has decreased in number, it has greatly strengthened in commitment, dedication, solidarity and quality orthopraxis! We are eager to share in June what HKBK accomplishes for their April and May fundraising events!

If you would like to make a donation to HKBK's efforts for the 31st Annual IWK Telethon for Children, you can do so by going to:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1113776&supId=413282164

February is Heart Month

 

11 years ago, February was nothing more than a pretty typical months for me. Sure, there was Valentine's Day and all the fun that went with that. With two of my children having birthdays in March, I'd spend a considerable amount of time preparing for their upcoming celebrations during the month of February. But it wasn't "Heart Month" to me. It became "Heart Month" for me after the birth of my third child, my daughter who was born with Congenital Heart Defects (CHD).

 

Before I was mom to a child with CHD,the hearts of February were Valentine related - candy hearts, heart shaped boxes, chocolate hearts on sticks, greeting cards with the pretty heart shape seen in the top portion of the above image. And while I still indulge in a heart-shaped box of chocolates in the mid week of the month, my mind is far more focused on the bottom image - the image of the human heart, the organ. Without being able to see the wording on the image defining each part, after ten years as a heart-mom, when I look at a diagram of the human heart I find it easy to identify different parts. I see the aorta, the pulmonary valve, the right and left ventricles, the right atrium, etc. With no previous background in medicine other than some grade school biology, it's quite remarkable just how much I have learned about how the human heart functions. Or, rather, how much I have had to learn about how the human heart functions.

 

A little earlier tonight, I watched a personal friend's video of her son's last year of ups and downs as a complex CHD patient. The young boy has not yet hit his teens but been through four open heart surgeries and will require more in the future to maintain and sustain his life. There is a profound sadness here - there is no cure. Those with CHD will always have CHD, always have the risks associated with their conditions and while some cases are more complex than others, no individual with CHD can be cured with current medical knowledge and practice. 

 

Consider joining me and the countless others who observe February as HEART MONTH in addition to the month when we celebrate love and exchange Valentines and continue on with our daily lives with work, school, our hobbies and family time and friendships. Be aware and care. 

To make a donation to a worthy cause that supports those with CHD, consider the Canadian Congenital Heart Alliance: http://www.cchaforlife.org/ or an organization of your choice.

And remember to....

Remember, Educate and Celebrate: CHD Awareness

As a parent to a child with CHD, it is hard to know how to begin this post even though I have acquired an extensive amount of knowledge and experience relating to CHD in the last 10 years. Truth be told, there is so much to be said and it is difficult to distinguish what needs to be said most. Looking at the image above, I believe it captures what needs to be talked about. 

A little over ten years ago, I did not know the meaning of "CHD." I had heard of kids having heart conditions but I did not know the medical terminology of Congenital Heart Defect or Congenital Heart Disease. On the other hand, I was well aware of many other ailments that afflicted children. I had seen promotional pieces on television by St. Jude Hospital and knew a fair bit about various types of cancers. I watched the Jerry Lewis Labor Day Telethon for the Muscular Dystrophy Foundation many times and became familiar with different types of MD. I had friends with other conditions; Spina Bifida, Epilepsy, Addison's Disease and I myself had spent a fair amount of time in and out of the hospital with my own health concerns. But I had not been familiarized with "CHD" through promotional television shows or telethons or movies. I knew kids could have heart conditions but I had no earthly idea of how prevalent "CHD" is.

I know much, much more about CHD now. I would like to say the reason why would be I'd studied medicine in university or had developed an interest to read about it as a hobby instead of my real reason to know so much about CHD -- the real reason I am "CHD Aware" is because I am a Heart Mom. In November of 2004, I was blessed to give birth to a beautiful and precious little bundle of bliss. Like many expectant mothers, I spent months imagining the moment immediately following delivery when my baby would see in my arms and I would see her face for the first time and had that glorious moment of infatuation as I gazed at her tiny body.

Instead, at the moment of my daughter's delivery, I looked down to see a very small blue-grey listless body. There was no movement, no cying, no sounds at all - other than the frantic staff scurrying towards her. My daughter was not a plump, pink, loudly wailing beautiful baby ready to be placed in my arms for a bonding moment. In those moments, I did not know if my child were alive or not. The minutes that followed felt like hours. Hearing the call on the P.A. system "Neonatal Team to Room 8 Stat" repeat is a sound my mind cannot forget. My daughter was swaddled with just a small portion of her face visible and brought close to me by a Neonatal Intensive Care nurse so I could give her a kiss before she was taken to N.I.C.U. for a team of specialists to do all in their power to ensure my daughter survived. 

Seeing my daughter after she was stabilized in N.I.C.U. for the first time was bitter-sweet. The good news was she was alive. The bad news was she was on life support with a breathing tube down her throat. Her tiny body was covered in electrodes connected to monitors and she had IV's in her head and hand and was in an isolation incubator preventing me from holding her. There seemed to machines everywhere. She was sick and as her mom, I wanted to wish it all away. I wanted a name for what was wrong with my baby. It was not any of the ailments I was familiar with. Having had two children previously and having attended many prenatal classes, read many books, spent time reading information on the Internet, etc., I don't recall ever finding information about the dangers of heart defects in babies. If the information was there, it did not register in my mind to think too much about it because I had no idea how common Congenital Heart Defects are.

It took several days for the specialists to diagnose each of my daughter's conditions but of all the days in her first few weeks in N.I.C.U. that haunt my mind the most is the day my daughter was taken for her first electrocardiogram and echocardigram. Having been raised in a home with my grandfather who'd developed heart disease in his late 50's and suffered a stroke during an open heart surgery, I knew a lot about adult heart disease. When the doctors began using terminology I recognized from my childhood experiences living with my grand-father, it became all too real and very frightening. Following the testing in the Heart Center,  I was taken to a quiet room with several staff and heard news I never expected to hear. My baby's heart was "broken"; that is not the word the professionals used but in my mind, broken was what I heard and how I felt. 

1 in 100!?! How can that be, I thought. Surely the serious and scary diseases were the ones I heard about frequently in prenatal classes and read about in the books - the risk of Down's Syndrome in older women who choose to have babies, Cystic Fibrosis Spina Bifida, Cleft Palate, Club Foot... And sure I knew heart defects happen too but never in my imagination did I think of statistics like:

CHDs affect nearly 1% of―or about 40,000―births per year in the United States.

 They are the most common type of birth defects.

 CHDs are a leading cause of birth defect-associated infant illness and death.

 More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.

 There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.

 About 75% of babies born with a critical CHD are expected to survive to one year of age. About 69% of babies born with critical CHDs are expected to survive to 18 years of age.

 Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

 

 Some heart defects can potentially be detected in babies soon after birth using Pulse Oximetry Screening, a fast, simple and painless test which determines the amount of oxygen in the blood and pulse rate. Standardizing this testing in newborns before discharge from hospital can save lives of babies with some types of undetected Congenital Heart Defects.

 My daughter's heart defects were not diagnosed correctly until she was ten days old. I had good prenatal care with an excellent OB/GYN at a leading top hospital in the region of the country I live in. I have several sonograms and my daughter's heart defects were not detected. If I had known then what I know now, I would have asked the questions shown in this diagram:

 

If you are pregnant, planning to have a baby or know someone who is, pass along this information. 

Sometimes the diagnosis of (a) CHD(s) is/are not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. John Ritter, famous for his role as "Jack Tripper" on TV's "Three's Company" died at age 55 from undiagnosed CHD. Joe Strummner, front man for the band Clash, also passed from complications of undiagnosed CHD at age 50. Being aware of CHD, being educated and sharing this information saves lives of babies, toddlers, children, teens and adults. 

I have been fortunate. My daughter survived the very difficult first months of her life and we were able to embark on a journey we did not plan or hope for but nonetheless, a journey with her as a part of it. She is now ten years old and while she has had corrective procedures, open heart surgery and other operations, my daughter has not been "cured". Her conditions are managed through diet, exercise, medication, countless clinic follow ups and tests and procedures and last but not least of all, faith in a future without further critical illness due to CHD keeps us hopeful that she will survive and thrive.

To learn more:

http://en.wikipedia.org/wiki/Congenital_heart_defect

http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3484063/k.E84C/Heart_disease__Congenital_heart_disease.htm

http://www.webmd.com/heart-disease/congenital-heart-disease

Fuel for the Fight: Reach Out!

Christmas has just passed, as well as Hannukah and Kwanzaa began a few days ago. In a few short nights, the world will be celebrating on New Year's Eve - ready to ring in the new year - 2015. 

A popular song to hear during the winter holidays is John Lennon and Yoko Ono's "Happy Christmas - War is Over." In many regards, the seemingly countless illnesses and disabilities that children worldwide struggle with are wars in and of themselves. Lennon was likely and clearly speaking of wars waged between nations but after some reflection, any parent or loved one of a chronically or terminally child, a child who has had a major illness or injury, or a child with disabilities would probably relate to the feeling of waging a war: a war against the disease(s), the symptoms, the side effects of medications and treatments, the loss of abilities and opportunities for their child and at worst, the impending death or passing of their child.

A portion of the lyrics sing:

A very merry Christmas
And a happy New Year
Let's hope it's a good one
Without any fear

And so this is Christmas
And what have we done
Another year over
And a new one just begun

[John Lennon - Happy Christmas (war Is Over) Lyrics | MetroLyrics ]

Imagine for a moment you are the mother, father, sibling or other loved one of a child diagnosed with a disease that he or she must fight a war against and in this war, you are the child's ally. Perhaps you are reading this and are already fighting in such a war. Looking at the world, "And what have we done?" - what have you done in the past year to help children waging wars against illnesses like cancer, heart disease, epilepsy, and the long list of other ailments too many young people face a battle with daily. If you are a close loved one of a sick or disabled child, you've likely done a lot - been their comforter, their advocate, their nurse, and so much more. 

In the midst of the heart-ache of having a sick child, it is difficult to cope emotionally, physically and spiritually. It can and often is a very alienating experience. Many parents of special needs children loose touch with family and friends due to the amount of them they must spend dedicated to caring for their child. Yet, reaching out to others going through similar situations who can relate to one's feelings caring for a sick or disabled child can be one of the most comforting means of helping one's self feel stronger and gives fuel to keep fighting the war against disease and disability. 

We must not get tunnel vision and look only at our own circumstances! Reaching out to help others is another way that parents and loved ones of sick and disabled kids can gain strength to win the battles. It's important to care for others as you would want them to care for you. While no one can possibly care for everyone all of the time, showing compassion, love and encouragement to others - even in small ways - can go a long distance to help both the recipient and one's self in feeling more capable to win the war waging on.

Our wish and prayer for 2015 is that the wars children face against diseases and disabilities would simply vanish but that hope is, sadly, an unrealistic one. But the hope that corporate and community groups, families and individuals will find it in their hearts to make a new year resolution to help sick kids is not an unrealistic dream. Education, awareness campaigns and fundraising are ways that every citizens can help those families battling wars against horrible diseases and disabilities. It is never too late to start.

For Cpl Nathan Cirillo & WO patrice Vincent Family

The young boy in the video here, Joshua Cochrane of Yarmouth, Nova Scotia, may appear as a familiar face and voice to those who have seen his charming smile on IWK Health Centre Foundation
posters and perhaps viewed his amazing performances during the Annual IWKTelethon for Children. The IWK is our HKBK;s home hospital, as it is for Joshua. For all the hundreds of shares on social media throughout the past days as our country mourns the loss of two more heroes, this is by far the most heart-warming, touching display of what it means to be a Canadian: to be proud, to be strong, to be free. Thank you, Josh, for your words and song as you've spoken for our country at large with your delightful voice. Please visit youtube.com to view this remarkable 8 year old's statement and singing
and share throughout your social media circles to help make Josh's hopes that Cpl Cirillo and WO Vincent's families and friends may indeed see this amazing tribute! ‪#‎Canadastrong #Wings4Josh

When A Child Is Sick...

One of my favourite telephone service features is "Caller ID". I'll openly admit I screen whether I pick up or let a call go to voice mail based on what number I see on my caller ID - especially if I am busy or simply not in the mood to talk on the phone. One of the most beneficial aspects of the feature, perhaps, is knowing when I really do need to pick up and answer a call. Such an occasion happened for me in early October.

Whenever I see the name and number of one of the schools my children attend on the display area, as a mom, I admit my heart flutters and my mind races with wonder of why their school is calling me. Most times it is nothing significant; perhaps I forgot to sign a permission form or send a payment for a field trip. It may be a teacher wanting to discuss a project or test. It could be they need volunteers to bake cupcakes. There are so many possibilities for why the school could be calling but the first worry I almost always have is, "Is my child OK?"

I answered as I usually would and on the other end was a female voice explaining to me that my daughter was feeling unwell. She had been walking a considerable distance in hot weather and became faint and dizzy, reporting her heart was racing and her eyes and head were hurting. The staff member informed me she was breathing heavily, shaking and appeared to her to be in need of help. I instructed the staff member to have my daughter taken to the nearby children's hospital emergency department and I would arrive as soon as I could. My daughter's principal and a friend took her to the ER and stayed with her until my mother and I arrived about thirty minutes later.

As a mom to a chronically ill child with many special needs, I'm very familiar with our local children's hospital emergency department. The waiting area was very crowded; much more than I have usually seen during my many trips there with my kids throughout the years. It appeared to me that many children waiting to be seen had likely been injured. It was unusually warm for early October and I anticipated many kids throughout our region were enjoying playing outdoors as the sun provided perhaps a final taste of summer. There were also several young children obviously struggling with colds or such. A nurse was making rounds with a pen and paper among the line up of non-urgent patients waiting to be seen by triage to compile a list of who to call in order of arrival.

I spoke with my daughter's school principal briefly before he left with my daughter's friend. My daughter had already been seen assessed by a triage nurse prior to my arrival. Recognizing one another from previous encounters, the nurse she pulled me aside to discuss my daughter's history and condition. Over the years, most parents I've spoken with in the emergency department waiting room will usually begin to show signs of irritation and distress as minutes pass towards an hour or more to wait to be seen. Being very familiar with the triage assessment of patients being given a 1, 2, 3 or 4 level based on how urgent it is for them to be seen by a physician, my heart sank a bit looking at my daughter's assessment sheet and seeing her listed as as level 1 triage.

Not matter what the illness or injury, seeing one's child in pain and distress is upsetting. It was difficult to see my daughter looking unwell - her eyes with a glazed appearance, her skin pale and clammy and seeming overall very fatigued as she tried her best to control her breathing with the use of a simple but effective brown paper bag. Once registered, we waited barely a few moments before we were called to go to a cubicle inside the emergency department. I could sense the glare of disgruntled parents and overheard one woman exclaim, "But they just got here!" In my mind, I was wishing we weren't there at all, let alone there under potentially serious circumstances.

 After a brief discussion with the third year resident, we were off to the Heart Center for an ECG (electrocardiogram) and as hours passed, several doctors examined my daughter and talked with talked with her about what had happened, how she was feeling, etc. A kind, gentle cardiology fellow arrived and soon after, her cardiologist came about 8 hours after she initially entered the ER. Hearing from a trusted doctor that I've known for a decade that she was alright was a huge relief. She was  encouraged to continue with her daily activities as usual and we had reviewed some management techniques she can use when she has episodes of tachycardia and palpitations. However, there was no clear answer for why she experienced the symptoms she had in the late morning hours. Tests didn't show any change in her heart function from her previous ECG and while I was thankful that her current ECG was good, it was disconcerting to leave with a big "WHY?" still looming overhead.

We were fortunate that after eight hours, she was feeling better and enjoying more than her share of free popsicles with a good blood pressure, heart rate and pulse oxygen levels. Each time we are discharged from the ER, I remind myself of how blessed we are to have a world class facility so accessible and how reassuring it is that if or when another incident happens again, it is reasonable to expect my daughter will receive the best care possible by excellent physicians. While there may not be answers to the "why" questions, it's helpful to know that because the IWK Health Centre has the resources to care for our region's sick and injured babies, kids and teens.

HKBK exists because we know youth in the Canadian Maritime provinces rely on the IWK Health Centre for so much. We're acutely aware of how important it is to ensure our local children's hospital remains as excellent as it is but also know that with more funding, the hospital can provide even more amazing care for sick and hurt children. Our story of that day could have been very different if it were not for the generosity and continued support of donors of the IWK Health Centre Foundation and supports or the annual IWK Telethon for Children and other events and campaigns held throughout the year. To check out some of the current scheduled events, take a look at the Foundation's Event Calendar by clicking here and be sure to check back often to see if there are any HKBK events listed!

And if you would like to make a donation to the IWK Health Center Foundation through HKBK Helping Kids be Kids, please go to:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1113776&supId=413282164

All funds donated via the Internet will be directly received by the Foundation, never touching the hands of our group. The online donation site allows only credit card donations. If you are interested in making a financial contribution or becoming involved with our group, email us at iwkhkbk@gmail.com for more information.

A Clear Blue Sky Interrupted...

A Clear Blue Sky Interrupted...

A warm but brisk Autumn afternoon, while waiting for my daughter to exit school at her 3:15 p.m. dismissal, a common occurrence took place before my eyes. Across the street at the IWK Health Centre, the life flight helicopter approached and landed. Even with the busy traffic of cars, trucks and transit buses, the sound of the helicopter's approach was blaring and thunderous. It was a vociferous sound; distracting and clamorous. Many people walking to and fro on the sidewalks did not so much as glance up. My eyes, however, were drawn to look up with my heart beginning to pound as I felt my palms get sweaty. I wondered, "Could they just be delivering supplies? An organ for transplant perhaps? A regular check in by the life flight crew? Maybe they needed to get more supplies for their helicopter? Or...or... was there a sick or injured child in need of emergency care?" Instinctively, I began to pray. My mind flooded with memories of stories and times of when my friends (and countless thousands more I don't have the honor to know personally) had their children require this service. After the helicopter landed, I watched as staff met the life flight crew mid-way to take the stretcher carrying what appeared to be an incubator-sized box - presumably with a patient inside. Within seconds, the staff ran the stretcher into the doorways atop the helicopter landing pad area.

My heart beat more rapidly and my prayers grew stronger that the child I presumed to be inside would be cared for, that the staff responsible for the unknown precious tiny human would have the capacities and resources to appropriately treat him or her, that the parents of the child were with supportive people. I reminded myself that not all children transported to the IWK Health Centre arriving by life flight are in critical condition and perhaps this was the best means of passage for an otherwise stable patient. A big part of me - the mom of a chronically ill, special needs child - hoped and prayed that this was the beginning of an another miracle at the IWK Health Centre.

As I watched the two crew return and enter their helicopter, I began to film their departure. In teaching the youth involved with HKBK: Helping Kids Be Kids, I have grown to appreciate that having tangible photos and videos to show to them helps drive home just how and why our work is so important. With some of our fundraising events and goals already established and underway, the group has wonderful hopes and dreams of presenting a grand and sizable donation at the 31st Annual IWK Telethon for Children. I, for one, have full confidence that they'll be on stage with a terrific donation to present at the 2015 Telethon!

Soon after the helicopter departed (click here to watch the video), my daughter came out of her school's front doors and we were on our way to the IWK Health Centre Foundation office with our Event Tool Kit request for new donation boxes, telethon posters, patient story booklets, stickers and more. As we made our way through a long hallway to our desination, we saw signs posted on the walls which brought wide smiles and big eyes to us both:

We don't mind the appearance or noise at all! On the contrary, we are thankful for it. The re-building of the Children's Heart Centre is exciting for us. It is a spot close to home for us as her little sister, Carly Rose, my daughter, was born with multiple conditions - including three Congenital Heart Defects requiring surgical interventions to manage and repair. With the pondering of questions still in my mind of what needs the child arriving by life flight might require fresh in my mind, these posters along the halls reminded me of the legendary care available within the walls of the building where we were causally passing through.

If you wish to get involved with HKBK, we are always welcoming new volunteers of any and all ages. You can send us an email to lmkuhn76@gmail.com with any questions you might have. 

You can also follow us at our Facebook page by clicking https://www.facebook.com/hkbk15 Please share our link and invite your friends to follow us our well.

To make a donation to HKBK click here! All funds raised through our page at the IWK Health Centre Foundation will go directly to the hospital. Official tax receipts are available for donations in excess of $20.00 or more by request. If you would like to make a financial contribution off-line, email us at iwkhkbk@gmail.com  

Thanks for your consideration!