Spirit of Giving


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A day I’ll not soon forget.

Laura MacAulay is a Member Service Counsellor at CAA Atlantic in Charlottetown, PEI and mother to Alexander and Porter, IWK patients.

July 8th, 2013, is one day I’ll not soon forget. At 28 weeks pregnant with twin boys I found myself being airlifted to the IWK from my local hospital here on P.E.I. My blood pressure was high enough they thought they may have to deliver my premature babies that night. After arriving to labour and delivery at the IWK, the amazing nurses and doctors where able to keep me comfortable and calm with their knowledge and equipment. They were able to stabilize my vitals enough for me to be admitted to the maternity ward on strict bed rest.

Premature baby

Alexander at three days’s old

During my three weeks of bed rest, I was “alone” as my husband had to return to P.E.I. to work. The nurses and doctors couldn’t do enough for me, something as little as getting me a drink, an extra blanket, or even just a short conversation to pass time. Without the kindness of the staff at the IWK I don’t think my period of bed rest would have been as pleasant as it was. I never really felt “alone”.

Part of my stay consisted of ultrasounds every Monday, Wednesday and Friday to keep an eye on the babies’ development. The first ultrasound determined that baby A had restricted growth (no or reversed blood flow from the placenta through the umbilical cord) which caused him to be tiny and not grow as well as he should. The restricted growth was thought to be caused by my high blood pressure and unfortunately, there was not much that could be done but monitor the blood flow. The doctors were very informative and pointed out all the parts of the babies. They even showed me when the babies had hiccups; nothing big, but their professional bedside manner was comforting when I didn’t know what was going to happen or when. We took things day by day, and every day they were growing on the inside I felt better about what was to come.

Premature baby in incubator

Porter at three day’s old.

The day my life changed forever was the day my precious angels came into this world at 31 weeks. The day started out normal. I went for my usual ultrasound but they discovered a reverse flow of blood going back through baby A’s cord so, then and there, the doctor decided it was time to meet these little boys. Baby A, my little Alexander, was born first, weighing 2lbs 4oz, and two minutes later his brother, Porter, was born, weighing 3lbs 3oz. Unfortunately my husband did not make it over to the IWK in time to witness the boys being born, but I never felt alone as the nurses were always there to update me on what was happening and even take some pictures of the teeny tiny babies.

Even with the boys being born so small and so early, they were troopers, and had very few health problems. Premature babies often have lung issues, so when I got to see my little angels for the first time I was not surprised to see them with a CPAP machine hooked up. The little mask covering their noses was forcing room air into their lungs to clean them out and get the lungs working strongly. Within 24 hours of their birth, the boys had a drug called BLES (bovine lipid extract surfactant) put down into their lungs – which in my opinion is the miracle drug. Within 12-24 hours, the CPAP was gone and the boys just had nasal prongs to give them air until they were strong enough to breathe on their own. Eight days after Alex and Porter were born they were strong enough to be sent home to our local hospital.

The fantastic doctors and nurses at the IWK were fast acting, attentive, knowledgeable and caring. Without them and their state-of-the-art equipment, the outcome could have been much different and my healthy happy sons might not be with us today.

Twin boys

Alex & Porter, 7 months old.

The IWK will always hold a special place in my heart, especially now that I had a personal experience. I realize how important it is to have this facility in our region. Through my work, we are now raising money through a raffle for a trip for two. Proceeds will go to the IWK Foundation and the Janeway Foundation in Newfoundland. We also do weekly “dress down” days.

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Learn more about fundraising for the IWK Foundation.

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Leaving a Gift for Tomorrow

Mary Theresa Ross is the Manager of  Personal & Planned Gifts with the IWK Health Centre Foundation. If you have any questions, or would like further information on how to make a planned gift to the IWK Foundation, please call Mary Theresa at 902-470-8240.

Mary Theresa Ross, Manager of Personal & Planned Gifts

Mary Theresa Ross, Manager of Personal & Planned Gifts

Each of us possesses the power to provide a lasting legacy to charitable causes we feel are important. A gift in your will not only provides tremendous personal satisfaction , but allows the IWK to plan for future projects with greater certainty and use donations to greater effect.

For me, working at the IWK Foundation is so much more than a career, it is my absolute passion. I believe in the need because I’ve seen it first hand. My daughter, Jody, spent more than four and half years as an inpatient being treated at the Health Centre.

I used to reflect on what it would be like for Maritime Families if the IWK was not here. A gift in a Will helps the Foundation with the security of knowing the funds are in place to allow us to continue to grow and provide care for future generations. It helps ensure the future will be stronger. Your planning is a part of how we help families.

Here is the top 10 things you can do today to leave a gift in your will to your favourite charitable cause.

Sincerely, Mary Theresa Ross, IWK Health Centre Foundation

Top 10 Things You Can Do Today to Leave a Legacy

1.) Prepare a will.

2.) Leave a gift in your will for the not-for-profit organization that makes a difference in your life.

3.) Leave a specific dollar amount or a percentage of your assets to a not-for-profit organization.

4.) Consider using assets for your legacy gift.

5.) Name a not-for-profit as a beneficiary of your RRSP, RRIF or pension plan.

6.) Name your favourite not-for-profit as the beneficiary of an existing life insurance policy.

7.) Purchase a new life insurance policy naming your favourite not-for-profit as the beneficiary.

8.) Remember loved ones with memorial gifts.

9.) Encourage family and friends to leave gifts to not-for-profit in their wills.

10.) Ask your financial or estate planning advisor to include charitable giving as part of your financial plan and to incorporate in their counsel to other clients.

Make a gift to the IWK Health Centre Foundation. 


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It’s Not Goodbye – A Summer Well Spent!

This summer, the IWK Health Centre Foundation was lucky enough to have Kristin Wilton come on board as an intern for a few months. We are so lucky she came to work with us. We cannot thank Kristin enough for all of her hard work, dedication and incredible positive attitude.  Below is Kristin’s final blog on her time with the IWK Foundation – we’re glad to know she found it to be such a rewarding experience. Thank you for everything, Kristin!

After working with the team at the IWK Foundation over the past 16 weeks, I can honestly say this organization changed me as a whole. It changed my outlook on life and has certainly reassured me of my career choice to become a Public Relations practitioner. Being involved with the public, caregivers, patients, families and events really made me feel like I was doing PR. I’ve learned that a lot of things in the world of PR can be mastered by practice. The three words “practice makes perfect” helped me in so many ways, especially with my writing. The more you write, the more you learn, the better you will get.

My experience here at the Foundation has been incredible. One experience that had a major impact on me happened on my third day of work. My supervisor informed me that I would be attending a big announcement at the Health Centre. I didn’t think much of it until I arrived at the Health Centre and met these two twin little girls – Kendra and Kinsey, who were very premature or “micro-premie” babies born at 27 weeks. A normal pregnancy is 40 weeks so being this early resulted in them spending most of their stay in the NICU (Neonatal Intensive Care Unit) on life support.As I followed a group of people down to a boardroom, hand in hand with Kendra, I sat in and watched the video of their life at the IWK. They were born at 1.8 lbs, each of them had five blood transfusions, one twin had 12 surgeries and the other had 13 and one of the girls had to have an emergency eye surgery. They spent nearly five months at the IWK experiencing liver failure and kidney failure.

As I was watching this video, I’m sitting there saying to myself “Kristin, keep it together. It’s your third day on the job. Do. Not. Cry.” But I couldn’t help it – I was completely filled up. My supervisor reassured me that each and every one of us that work in this organization has a moment like this.

After the video was over, we walked to the Gallery for the announcement – the IWK was receiving a donation of $1 million from Kent and Irving Shipbuilding. This donation will support a state-of-the-art Neonatal Intensive Care Unit as well as ground-breaking research in the treatment of childhood blood disorders and leukemia.

Following the announcement, five-year-old Kendra and Kinsey stood up on the podium and thanked Kent and Irving Shipbuilding for their donation as it will go towards helping children like them.

Today, Kendra and Kinsey are two thriving five-year-olds, and despite continuing health issues and regular visits to the IWK, they will grow up to live normal lives. I don’t think this would be possible without the remarkable caregivers at the IWK who helped this family get through this tough time.

It was the most touching thing I’ve ever witnessed in my life. It was events like this over the past 16 weeks that made me confident that the career path I’ve chosen is a perfect fit for me. Thanks to the IWK Foundation, working with this not-for-profit organization has opened my eyes and helped me discover my passion. It proved my passion for working with people, my love for children and my drive to help raise money for children and the world-class specialized care facility we all call the IWK Health Centre. 

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Made-to-Order Independence

This article was written by Debra Wells-Hopey for the Spring/Summer issue of Izaak Magazine – an in-depth, behind the scenes, all-access publication highlighting the incredible, everyday happenings at the IWK Health Centre.

11-year-old Taya and occupational therapist Julia Gates

11-year-old Taya and occupational therapist Julia Gates

How a customized wheelchair program provides quality of life for hundreds of kids.

Taya is spirited, bright and patient as she describes the way she gets around in the world.

“When I move my head left, I turn left,” she says enthusiastically, even though she must have explained this to people many times over. “When I move my head right, I go right. And when I move my head back, I go straight forward.”

At 11 years-old, Taya has Cerebral Palsy and is a long time visitor to IWK Specialty Seating, a service within the IWK’s Rehabilitation Service. The service offers assessment and provision of customized seating and positioning equipment, including seating inserts, wheelchairs, special-needs strollers, bath seats, car seats and toileting aids.

Julia Gates, Occupational Therapist in Specialty Seating, and Nancy Cashen, Operations Manager for Rehabilitation Services, have known Taya since she was three years old. “This program is designed to assist children who can’t walk on their own, most often due to Spina Bifida, Muscular Dystrophy or Cerebral Palsy,” explained Gates. “Children are referred to the program as early as 14 months and stay with us until they are ready to transition to adult health care.”

Gates explained that although children this young are able to still use a stroller, it means they are dependent on others to get around — at an age when they want to start exploring the world on their own.

“Independence is an essential part in a child’s growth and development,” added Cashen.

Specialty Seating at the IWK consists of Cashen and Gates, as well as a Specialty Seating Technician, David Beattie, and a Funding Coordinator. Together, along with the family, this team determines what kind of wheelchair would be best for the child.

“We take many factors into account,” says Gates. “For instance, a level of hand mobility is essential for maneuvering a manual wheelchair, but not necessary for a power wheelchair.”

The amount of seating support required is a complex assessment that is completed by the occupational therapist and takes into account the disease prognosis, planned orthopaedic surgeries, maintenance of skin integrity, comfort, functional abilities and wheelchair skills. All children are different, and the amount of support required could be viewed as mild, moderate, or complex. Generally, seating for a mild support is not custom made, and may be arranged through a local wheelchair supplier in the community. The seating for children who require moderate or complex support is custom made by the Specialty Seating Service at the IWK.

There is a workshop onsite at the IWK where Beattie employs his expertise. For specialized seating, an impression is made on a mould that resembles a large bean bag. This shape can then be transferred to a 3D digital model on the computer. These images are sent via email to the United States where the only machine of its kind in North America manufactures the seat. It is then shipped to the IWK for fitting.

As for Beattie, he has been with the hospital since 1989. He was familiar with an Occupational Therapist who suggested he may enjoy the work. Considering Beattie has remained in the program for more than 24 years, it certainly is a great fit.

“This is the perfect job as far as I’m concerned,” says Beattie. “I get to work with my hands and help people simultaneously. The work is challenging and rewarding.”

Beattie’s workshop looks much like any other, yet very unlike anything you expect to see in a hospital. There are various materials stored: pieces of repurposed wheelchairs, three industrial-sized sewing machines, neoprene for upholstering, two band saws, a table saw and a wealth of tools.

“When we first see someone we measure them for a seat using a fitting frame. From these measurements I construct a seat out of foam and plywood and I upholster it. I also adjust and repair wheelchairs as needed. I’d say one of my favourite parts of my job is going on the mobile clinics. Several times a year we go to Cape Breton and the Annapolis Valley. At times we go to schools here in HRM, or even homes.”

Gates explained that the first order of business when a child needs a wheelchair or seating device is to meet with the family and get to know their needs.

“This initial meeting is so important,” says Gates. “It’s when we first get to meet the child; establishing their needs, administering a postural assessment, taking measurements, then making recommendations.”

“Recently we had a child who needed a new power wheelchair. We had two styles and tried them both in the home to see which operated better in that specific environment. It needs to work in the child’s daily life.”

Having the right wheelchair and seating can make all the difference in the world when it comes to quality of life — kids need to participate with classmates, explore their environment and have a sense of independence.

“When a child receives their first wheelchair it is often a period of growth for both the parents and the child,” says Gates.

Taya’s mother Christine knows all about it. She has been taking Taya to Specialty Seating and working with the team for eight years. Taya was only three when she received her first wheelchair and met the group at Specialty Seating. She was outgrowing a stroller at this point, not only in a physical way but also as a growing child her needs were changing — she had a desire to be independent, to be able to explore the world on her own.

“Although she was small enough to still use the stroller, it no longer seemed to be the appropriate choice,”explained her mom. “The chair was so much better for her

Izaak#Provincial#05-02-2013#A01posture, and allowed her to be eye level with her peers. Her diaphragm was also better supported which made her breathing and therefore her speaking so much better.”

Taya was born with cerebral palsy. She enjoys her grade five class and likes to read — especially Harry Potter books. She also swims and uses a sit ski at Wentworth ski hill.

“I have both a manual and a power chair,” explained Taya. “I use the power chair at school. Some places are easier to use a wheelchair in than others though.”

Although Taya drives herself around by using head movements, the wheelchair must be steered remotely by a device similar to a joystick when it is being loaded into the family van. Apparently, according to a laughing Taya, dad is an expert at it, while mom, who is quick to agree, isn’t as deft.

Taya was eight when she got her first power chair. She started at six years old “training” with a joy stick, but it was a lot of work and a head array began to make more sense. The family visits Specialty Seating about once a year.

“To a certain extent, the chairs grow with her. Especially the manual chair, which she will have for about eight years,” explains Christine. “The power chair needs changes or replacing more frequently.”

As for cost, the family is fortunate that both Christine and her husband have good health care plans, however, they still certainly incur costs. The head array alone cost $10,000, which is as much as the chair. Then there are the costs of converting the family van with a manual ramp that has to be lifted and unfolded. A power system is even more expensive. This is the reality for families with a wheelchair. Taya gets to continue to visit the team at Specialty Seating until she is ready to transition to adult health care.

“I can’t say enough about the program and the staff,” says Christine. “When your child is first diagnosed, you’re in a daze. You don’t know where to go or what to do. They have helped us immensely, even in emergency situations.”

One such situation was during a weekend when Taya’s chair was accidentally run over, crushing one of the wheels. It meant facing a whole weekend propped up or in bed. Not a great thought for a young, energetic girl like Taya. Christine contacted Gates and Beattie who were more than willing to go into work on a Saturday to get the chair fixed. Says Taya, “Dave and Julia are extremely nice people and I would come to them all my life if I could.”

And there’s no higher praise than that.

To read the full issue of Izaak magazine visit www.iwkfoundation.org/izaak

Make a gift to the IWK Health Centre Foundation.


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Breathing Space

This article was written by Tom Mason for the Spring/Summer issue of Izaak Magazine – an in-depth, behind the scenes, all-access publication highlighting the incredible, everyday happenings at the IWK Health Centre.Dr. Laine Johnson brings highly-specialized airway reconstruction surgery to the IWK

Larkin looks at the plastic fish and bubbles

Larkin looks at the plastic fish and bubbles

Larkin Pottle was born four years ago with tracheomalacia, bronchomalacia, and subglottic stenosis of her trachea — conditions that severely restricted her ability to breathe on her own. Her parents, Rhonda and Brent Pottle, struggled with the tracheotomy that allowed her to survive the process. As she grew, breathing on her own started to look

Like a possibility; surgery to allow this to happen was the next step for the Pottle family. Tracheotomies are one of the most vital surgical procedures in modern medicine, but they are actually very old. The surgery is depicted on Egyptian artifacts more than 5,000 years old and described in Sanskrit texts from around 2,000 BC. A tracheotomy involves placing a tube through an incision in the neck to bypass the nose and mouth and allow air directly into the trachea. Every year they save countless lives; but for most young children who have undergone the procedure,

a normal life doesn’t begin until the tube has been successfully removed. That can prove to be difficult.

Dr. Liane Johnson uses a scope to view Larkin's airway.

Dr. Liane Johnson uses a scope to view Larkin’s airway.

That’s where Dr. Liane Johnson comes in. Dr. Johnson is a pediatric airway surgeon at the IWK, the only doctor in Atlantic Canada to perform a specialized form of airway reconstruction surgery in children. The innovative technique involves using the child’s own rib cartilage to expand the scarred airway to attempt to achieve a normal diameter airway (air passage). Because the technique relies on tissue from the child’s own body, there are no issues with rejection.

Dr. Johnson learned the complex procedure during a two-year fellowship at the Cincinnati Children’s Hospital Medical Center under world-renowned pediatric otolaryngologist Dr. Robin Cotton, who pioneered the technique 30 years ago. She has already performed about 20 of the surgeries at the IWK. She says the procedure offers the patient and family a degree of independence that is life-changing.

“With proper patient selection, they can be very successful surgeries,” she says. “It’s rewarding to see the results.”

Larkin Pottle’s conditions were serious and because she needed constant medical care, Larkin could never be left alone. This left her family with the task of learning how to take care of her properly at home. Any kind of mucus plug or blockage of the tracheostomy tube could also be disastrous. It was a 24-hour-a-day job for Rhonda and Brent,

one that required plenty of professional help. “We had to get professional respite care at night so that we could get some sleep,” says Rhonda.

Rhonda Pottle cuddles her daughter Larkin Pottle as they wait for Larkin's appointment at the IWK.

Rhonda Pottle cuddles her daughter Larkin Pottle as they wait for Larkin’s appointment at the IWK.

Along with the basic skills that every new mother learns — feeding Larkin and changing her diapers — Rhonda quickly became adept at a number of medical techniques, including suctioning a tracheotomy tube and performing mouth to trach resuscitation. If Larkin accidentally removed the tracheostomy tube, the Larkin family had to be prepared to perform CPR.

“It’s not that difficult. Anyone can learn to do it as long as they’re not afraid of it,” says Rhonda. Larkin was approaching her second birthday when doctors discovered she was breathing through her nose and mouth around the tracheotomy tube. It was good news. It meant the airway was growing and the problem was correcting itself. But scar tissue had formed, and Larkin’s airway needed to be repaired before the incision in her trachea could be permanently closed.

This picture was taken at the level of the vocal cords showing complete obstruction of the subglottic airway, just beyond the vocal cords.

This picture was taken at the level of the vocal cords showing complete obstruction of the subglottic airway, just beyond the vocal cords.

Rhonda began the search for a doctor who could do the surgery. She and her husband had already made plans to travel from their Stephenville, Newfoundland home to Cincinnati to meet with Dr. Cotton when they heard about the IWK program. “I heard there was a doctor in Halifax who had studied with Dr. Cotton and was using the same procedure.” The Pottle’s first visit to Halifax was a little disappointing. Dr. Johnson examined Larkin and told the family to come back in three months for reassessment as it was

too soon for the operation. “That’s the hardest thing to say to parents: ‘She’s not ready,’” says Dr. Johnson. “But if you do the surgery too early the consequences can be devastating. The last thing I want to do is set up a spiral of failure. Sometimes it’s just safer to wait.”

This picture was taken just below the vocal cords showing a completely open subglottic airway following placement of rib grafts.

This picture was taken just below the vocal cords showing a completely open subglottic airway following placement of rib grafts.

When the day finally came, it was a long one. The Pottles spent eight hours waiting for Larkin’s surgery to end. Dr. Johnson constructed two rib grafts to expand the damaged airway, placing them carefully in the trachea below the little girl’s voice box. When it was over she was sedated and ventilated in the intensive care unit for nine days, but after stent removal she was soon breathing on her own. It was a success.

There have already been many milestones for the Pottle family. Larkin had a bout of the flu during the winter – a normal rite of passage for most four-year-olds, but one that would have brought on a serious medical crisis before the surgery. This time it was no big deal, says Rhonda. The family left for a Florida vacation in March, the first family trip since Larkin was born that didn’t centre around a medical appointment. Most importantly, Larkin is gaining a measure of independence that she didn’t have before. She’s getting ready to attend preschool and is making friends her own age for the first time. “She loves other kids,” says Rhonda. “Finally she can be a kid herself.”

To read the full issue of Izaak magazine visit www.iwkfoundation.org/izaak

Make a gift to the IWK Health Centre Foundation.


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These Hands.

June 1st and 2nd was one for the record books! Spirits were soaring as once again, generous Maritimers stepped up for the IWK and declared it as a special place and an absolute priority for families. Thanks to the incredible generosity of our donors, we were able to raise $5,877,139.53 during our 29th Annual IWK Telethon for Children on CTV!

To add to the merriment, on Saturday evening we debuted “These Hands” – a very special video created in collaboration with Canadian Folk/Celtic singer-songwriter, Dave Gunning.  Direced by Scott Simpson of Playmaker Films, this video showcases the incredible strength and community inside the IWK Health Centre.

We are proud to announce that “These Hands”, co-written by Gunning and George Canyon, is the East Coast Music Awards 2013 Song of the Year! The song accompanies a children’s book by the same name, which teaches us that every person has the ability to be a hero of the human kind.  A portion of the proceeds from the sale of the book supports the IWK Health Centre Foundation.

Thank you Dave Gunning for your incredible support and commitment to improving the lives of Maritime families who rely on the care of the IWK.

“I was excited to be involved with this project because of the great work that’s done by both the staff at the hospital and the Foundation,” says Gunning. “I’m very proud to have the song being used for such a great purpose.” 

Hope you enjoy the video, please feel free to share it!


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Generosity Rocks!

Thank You Bedford Masonic Lodge 104 and the Masonic Foundation of Nova Scotia!

This past weekend was a busy one for the IWK and the IWK Foundation, but only one event brought the crowd to their (dancing) feet. The Bedford Masonic Lodge 104 held Free Bird, a rockin’ benefit concert in support of Mental Health Awareness, at the Lower Deck Bar & Grill on May 26. This event benefited several mental health organizations, including the IWK Health Centre.

The incredible generosity of the Masonic Lodge did not stop there; the Masonic Foundation of Nova Scotia recently announced they will be donating $10,000 to mental health care at the IWK! Their donation will go a very long way to changing lives through excellence in care.

Events like Free Bird not only raise much-needed funds, they also bring our community together to create an open dialogue on mental health. This is a conversation that must keep going! One of the Health Centre’s goals is to remove the stigma that exists around mental illness, and the more we all talk about it and share our experiences, the faster we will move toward positive change.

The crowd at Free Bird was treated to concerts by local bands who played everything  from rock to swing-influenced tunes. Bands included: Loose Ends, Swingology, Remedy, Memphis Nights, and The Take It Easy Band. A silent auction and 50/50 draws rounded out the event perfectly.

We are so grateful to the Bedford Masonic Lodge 104 and the Masonic Foundation of Nova Scotia for their generosity and for including us as a beneficiary of this unique event – and to the community as a whole for attending and supporting this very important cause.  Your contribution will surely change lives; together, we really can make a difference.

Swingology

Swingology had people up and dancing the night away!

Loose Ends at Free Bird

Loose Ends rocking the stage!