Heart to Heart: Moms raise awareness for Congenital Heart Awareness Day

February 20, 2016 · 0 Comments

February is “Heart Month” and February 14, Valentine’s Day, was proclaimed “Congenital Heart Awareness Day” in Shelburne and across Canada.

Local families met with Mayor Ken Bennington at the February 8 Council Meeting to witness the Mayor make the official declaration.

In the hope of raising awareness for Congenital Heart Defects (CHD), the world’s number one birth defect, three local Moms shared their stories with the Shelburne Free Press about the courageous battle their children wage every day – with every beat of their heart.

In last week’s issue, we featured the journeys of Tiffany Randeraad and her 11-month-old son Bentley, as well as Amanda Clarkson and her 21-month-old daughter Penny. We conclude this week with Melissa Kottelenberg, mom to seven-year-old Tyson.

Tyson was born with several complex cardiac defects, the most serious ones being Hypoplastic Right Heart and Tricuspid Atresia.

His heart is missing an important valve and has only one pumping chamber instead of two; so essentially, he was born with half a heart.

His defects resulted in three open-heart surgeries at Sick Kids Hospital, the first being at 13-days-old.

He spent much of his first three years of life in and out of Sick Kids.

Once his cardiac condition stabilized, he still suffered from frequent recurring pneumonia because of a compromised immune system and another condition called pulmonary vein stenosis that affects his overall lung health.

He is doing better now because our family has discovered the powerful effects of essential oils, and we are so grateful for the positive changes in his health.

Because of the high venous pressures in his heart, he has been on anticoagulant therapy medication for over five years and this is something he will need for the rest of his life.

Having a toddler and young preschooler on blood thinning medication is hectic and scary to say the least, but now that he is a bit older it is getting much easier.

Even still, the slightest thing such as a cold or fever or change in his diet can affect his blood levels and cause serious nosebleeds, and even put him at risk of blood clots or stroke.

We manage his blood levels at home with a machine much like what diabetics use.

It saves a lot of time and stress to be able to test his levels from home instead of doing bi-weekly blood work.

Today, Tyson is enjoying Grade Two and seems to be doing fairly well academically. Once he got over his “fear of people” from spending most winters isolated from other children, he is now a very social kid with a zest for life.

If you saw him, you definitely would not know that he has half a heart, unless you watched him run a race. He is followed by several departments at Sick Kids Hospital, including cardiology, respirology, nephrology, and thrombosis.

We want the community at large to be aware of the seriousness of CHD and how it impacts the lives of those affected by it. If we can save even one baby’s life in this community through CHD awareness, then we have been successful.

One in 100 babies in Canada and one in 70 babies in Ontario are born with some type of CHD, representing one to three per cent of births.

CHDs kill twice as many children each year as all childhood cancers combined.

The term “congenital” means that the defect is present at birth.

There are over 35 known types of CHDs which vary in severity, ranging from a tiny hole in the heart that may never require surgery to life-threatening defects which require open-heart surgery within hours or days of birth.

Sadly, more than 4,000 babies born this year in Canada will never celebrate their first birthday because of complex congenital heart defects, and thousands of CHD children die before ever reaching adulthood.

If the ultrasound shows the possibility of a heart defect, parents should immediately make an appointment with a pediatric cardiologist who will have access to the most advanced and accurate diagnostic tests.

If you are concerned that your newborn baby might be at risk of having a CHD, ask to have a pulse oximeter reading shortly after birth.

This is a simple, non-invasive, pain-free test which involves clipping a sats monitor around your baby’s index finger or big toe. It only takes a minute but it would allow the doctor or midwife to monitor the baby’s oxygen saturations in the blood and therefore aid in early detection of more severe congenital heart defects.

Some common symptoms of an undiagnosed CHD in babies and children are decreased energy, sweating while eating, increased work of breathing, and cyanosis. Remember, when it comes to your baby think HEART:

Heart Rate: Is your baby’s heart rate too fast or too slow? (Normal 100-160 beats per minute)

Energy: Is your baby too sleepy, quiet, or lethargic? Too tired to feed or falls asleep during feeds?

Appearance: Is your baby a pale, waxy, dusky or blue/grey colour?

Respiration: Is your baby breathing too fast or too slow? (Normal 40-60 breaths per minute)

Temperature: Is your baby cold to touch, particularly hands and feet?

For more information on CHDs, please visit these websites: www.cchaforlife.org and www.congenitalheartdefects.com.

By Marni Walsh