TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

CHD Awareness Week

"My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever."
Psalm 73: 26


February is Heart month, and February 7-14 is Congenital Heart Defect (CHD) Awareness week. I simply have to do a blog post for CHD awareness.
Right now I am feeling pretty passionate about CHD awareness. I just can't believe that even though CHDs are the #1 birth defect, there is still no mandatory testing at birth.

You know the PKU heel prick that they do to your newborn shortly after birth? The one that makes your baby scream because it hurts when they try to draw blood from his foot? That is to test for a rare disease called Phenylketonuria, which affects about 1 in every 10,000 to 15, 000 babies worldwide.
CHDs AFFECT 1 TO 3 IN EVERY 100 BABIES IN CANADA ALONE, yet no mandatory testing is done for this. There is a very simple way to test for CHDs - a pulse oximetre reading given shortly after birth. It involves wrapping a band-aid type probe around the newborn's finger or toe and it reads the oxygen saturations in the blood. Simple. Painless. Non-invasive. No screaming involved. This non-tormenting device is sitting inside hospital cupboards.

PKU is 1 in 15,000. CHD is 1 in 100. Hmmm....

Ok, now that that is off my chest, I will continue :)
CHDs affect 1 in 100 births and kill more children each year than ALL childhood cancers COMBINED. This year alone, 4,000 babies will not live to see their first birthday because of complex CHDs.

There are 35 known types of CHDs, ranging from small holes in the heart that may never require surgery to complex CHDs which require surgery within days after birth. Tyson has 4 of these complex CHDs, as well as two holes in his heart.
This week was an important week for Tyson and our family, and for all families affected by CHDs. With the help of another heart Mom Shannon Heighington from Orangeville, both mayors of Orangeville and Shelburne have officially declared February 14, 2011 as Congenital Heart Defect Awareness Day! This morning Tyson had a "pow-wow" with Shelburne's mayor Ed Crewson so that we could be present for the signing of the declaration. A reporter from the Orangeville Citizen was also there, so look for a picture of Tyson high-fiving the mayor in the next edition of the Citizen :)
I am so excited that these two small communities have acknowledged the importance of CHD awareness. Next year it's our goal to raise awareness at a provincial level, and perhaps even make February 14 CHD Awareness Day nation-wide. I'll be working alongside another woman named Laura who is also very passionate about raising CHD awareness. In fact, she has been imperative in starting a foundation called "Wyatt's Warriors Congenital Heart Defect Foundation of Canada." For more info on this foundation or how you can donate, go to http://www.wyattswarriors.ca/.
The reason I am so fired up about awareness is because I believe that awareness leads to support, education and research. Research leads to funding. And funding leads to HOPE.
Please join me in raising CHD awareness. On Monday, February 14th, please wear the colour RED. It's easy to do because it also happens to be Valentine's Day. And if someone comments on your bold red clothing, please explain to them what you have learned about Tyson and CHD.






This is a picture of the official declaration :)

The following are links to some local newspaper articles that have been printed recently in view of CHD Awareness Day (two of them were written by yours truly :)

www.citizen.on.ca/news/2011-01-06/Front_Page/Tyson_triumphing_over_congenital_heart_defect.html

www.orangeville.com/opinion/letters/article/934433--raising-awareness-that-february-is-heart-month-in-canada

www.citizen.on.ca/news/2011-02-10/Front_Page/Dufferin_rallies_for_heart_defect_awareness.html

Happy Reading!

Mel:)

1 comment:

Garth said...

Very cool, sister. God will keep passion burning! Great write ups!