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

February 12, 2016 · 0 Comments

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

Local families met with Mayor Ken Bennington at Monday’s 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 are sharing their journeys for a two-part story with the Shelburne Free Press about the courageous battle their children wage every day – with every beat of their heart.

Tiffany Randeraad, Mom to 11-month old Bentley:

Bentley was born with TGA (Transposition of the Greater Arteries).

He was diagnosed at one-day-old. At three-days-old he had a BAS (Balloon Atrial Septostomy) preformed in order to enlarge the small hole between the upper two chambers of the heart, known as the atria.

That hole is what allowed some oxygen to get to his body, by enlarging it, he could wait a few more days safely for his surgery.

At six-days-old the TGA reversal happened. This is when they take the two main arteries of the heart, the one pumping the blood, the other oxygen, and reverse them. He had a very speedy recovery and left Sick Kids Hospital six days later, allowing him to finish recovering in the comfort of his new home.

Bentley is having his first birthday February 26.

He is doing really well and progressing at the right speed. He is a strong, independent and very happy baby.

What I think people should be aware of is that there are 1 in 100 babies born with CHD and many other illnesses that require special attention when it comes to germs.

Therefore, schools should be stricter when it comes to children staying home when they are sick.

Amanda Clarkson – Mom to 21-month-old Penny

Penny’s official diagnosis is tetralogy of fallot with pulmonary artresia and MAPCAs, as well as dextocardia. She is almost 21 months old.

Our little lady Penny has been out of Sick Kids for eight month. So far, this has been the longest we’ve been out of hospital since she was born.

Penny is really thriving right now, and we totally attribute it to the blended diet she started last April and being home and happy.

We’ve been able to do all the things as a family that we so desperately wanted, and needed, to do after Penny became sick. She loves to dance, talk (scream) and play the piano. She is getting into everything and is just starting to walk, something we’ve worked so hard to achieve.

Our weeks are pretty busy: we see physio and occupational therapy weekly and speech each month.

We go down to Sick Kids about every three months now for various appointments with different departments.

Heart-wise, this is the most solid she has ever been and our cardiologist is continuously shocked by how well she is doing. We have a saying in our house that “everything is on Penny time,” and it’s very true, including when her next Cath will be.

It was supposed to be last September, but she has managed to avoid it with her awesome healing powers!

We still have a couple more surgeries in her future, but we really just try and focus on the day to day with her. There are a lot of days now that I don’t think about her condition multiple times a day; it’s nice. We just love watching her grow and develop. She is getting so strong and I’m so proud of this feisty little girl.

I know that there has been a couple more heart babies in the Shelburne area born over the past year and I feel like it would be great if we all got together and thought of some ways we could bring more awareness to the cause: discussing CHD and how not every case is caught prior to birth from ultrasounds; what signs to look for with a newborn, toddler, or young teenager.

I recently connected with a family who just found out their son had CHD at 13.

My biggest concern, given how common CHD is, is knowledge that is not routinely passed onto expecting parents, that this can and does happen or what to look out for.

Often, I thought I was crazy that something just wasn’t quite right with her.

I really feel like if we hadn’t have had River first, I may not have pushed so hard for treatment for Penny. Scary stuff.

When I heard of heart problems with babies, prior to actually having one, I thought about holes in the heart. Never did I think kids were born missing critical pieces to their hearts or having multiple problems.

The public should also be aware that parents and children may experience Post-Traumatic Stress Disorder (PTSD) after having a sick baby in and out of the hospital.

Next week, Melissa Kottlenberg shares her journey with seven-year-old son Tyson, along with some tips to keep in mind.

A Facebook group has now been started for local heart families. If you or someone you know is looking for support, feel free to visit www.facebook.com/groups/327303710741270. If you would like to help children with CHDs, consider making a donation to www.cardiackids.ca in direct support of the Labatt Family Heart Center at Toronto’s Hospital for Sick Children.

By Marni Walsh