Tag Archives: CHD Awareness Week
Today is not normal.

Today is not normal.

February 7, 2013

Today should have been a celebration of my husband’s birthday.

Today should have been a day to rally around Congenital Heart Awareness Week.

Today should have been the start of our wedding reunion weekend in California.

Today should have been a day to finish up some work, get the kids to school, face the Minnesota winter.

But that’s not today.

Today our 4-year-old daughter Eve, is having neurosurgery – 1500 miles from home – to remove a brain tumor.  Nothing about today is normal.

I do not want to know what a cranial resection entails, no more than I wanted to know what a heart ablation or mitral valve prolapse entailed 4 years ago.

I do not want to understand that my little girl will be awakened mid-surgery, while her skull is still open, to make sure her limbs can move.

I do not want to know her fear and confusion.  I do not want her to be in pain.

I do not want to know that this sweet child, who has not been on this planet even 50 months, has had two heart surgeries and a brain surgery.

I do not want to know.  But I must know.

That is our job, as her parents and protectors.  To be smart and strong.  To understand what we can, and question what we don’t.  No stone can be left unturned.

I have no idea how such misfortune could befall one small girl.  But I do know her scars – on her chest, and now on her sweet head – will not define her.  They are part of her journey now – but her life will have meaning and beauty and power not because of the scars, but in spite of them.  Yes, I hope that somehow these new challenges will make a difference in other lives, as I know her heart has.  That is the only way to see around the randomness of it all.

Until today, we were 1in100.  Now we are also 1in1000.  Childhood brain tumors affect 4,200 kids in the U.S. each year.  Almost the same number of infants – less than one year old – die each year in the U.S. from congenital heart disease.  Comparing statistics is one thing. Comparing merit is quite another.

So, in honor of Eve, this is my small contribution to CHD Awareness Week: to NEVER again compare funding dollars or research numbers between horrific pediatric diseases.  I don’t care how common or downright rare the disease is.  If it’s your child, there is but one answer: make it go away.

Just because pediatric heart disease is more prevalent than pediatric cancer does not make it more important. Comparing research methodologies or means for two wildly different diseases is like comparing a paddleboat to a jetski.

Awareness is nothing without data. Data is nothing without people. People are nothing without collaboration. Collaboration is what makes the information meaningful enough to do something with it. I don’t care if you are a parent, a physician, a researcher or a technician – no one wants to feel like they are bringing a toothpick to a gunfight. Listen to each other. Learn from each other. Share information that can improve chances.

No one wants children to have their chests or skulls cut open to survive.  Even the doctors that do it don’t want to do it. They just have to do it.

Until we can prevent these things from happening in the first place, today we have early detection, access to effective treatment, meaningful data, constantly improving technologies and collaboration.

Today is not normal. Today my daughter becomes both a heart survivor and a brain tumor survivor. And she is amazing.

 

 

The Letter.

The Letter.

Letter shared by Val Guerin…who sends a CHD awareness letter out each year to family and friends.  This was the highlight of our week…and there is absolutely no way we could have said any of this better.  Thank you Val, for all you do.  And to little Cora for being the HLHS fighter she is!  You are 1in100.
While preparations are being made to celebrate hearts for Valentine’s Day, families affected by congenital heart defects recognize February 7th to the 14th as Congenital Heart Defect Awareness Week. The intent of this letter is to promote awareness and understanding through education, resource provision, and to suggest ways you can help. It is also to celebrate the efforts of children and adults who live with congenital heart defects (CHDs) and to commemorate heart Angels who are no longer with us but who continue to inspire through their bravery in life. The hyperlinks in this letter are references as well as resource sites that may be valuable to other families.

Congenital heart defects occur even with excellent pre-natal care. Pre-natal scanning has enabled families to prepare for surgery before birth (Children’s Hospital of Philadelphia). Surgeries have even been conducted in utero (Children’s Hospital Boston). There are 35 known defects, and approximately 40,000 babies with CHDs are born each year in the US (Little Hearts, Inc.).

While CHDs are the most common birth defect, there is a lack of government funding  (Children’s Heart Foundation) and care centers for the increasing number of adults (Adult Congenital Heart Association).

The State of Connecticut has granted a proclamation to recognize Congenital Heart Defect Awareness Week, but this remains a temporary measure. A federally recognized week would increase the amount of funding for research and support for families. The Congenital Heart Information Network provides information on how you can contact local government representatives.

Another important facet of awareness is the implementation of routine pulse oximetry screeing for newborns to prevent loss of life due to undiagnosed heart defects. Little Hearts, Inc. published a member survey that found only 2 out of 100 babies were screened at birth for congenital heart defects. History was made this year as the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children made a recommendation to the Department of Health and Human Services for pulse oximetry screening to be part of every newborn screening. A Heart Mom and advocate who has been tirelessly working toward this goal details the progress at 1in100.org.

Children with CHDs may not present with outward symptoms. Many children have great endurance and participate in a multitude of sports. Alternatively, the older child in a stroller is not lazy, but may have weak stamina. The child sitting on the sidelines of a group activity may not be shy, but physically unable to participate. The baby diagnosed “failure to thrive” and the very thin child may not be results of physical neglect.

Many children with CHDs have endured at least one surgery in their lifetime and countless procedures ranging from clinical checkups such as electrocardiograms and echocardiograms to heart catheterizations, further surgery, and possible heart transplantation. If you would like to directly help inpatient children, Saving Little Hearts provides care packages and accepts sponsorship donations. TCHIN assists families with expenses during long hospital stays or visits far from home. Heart Support of America also provides grant funding to families.

Thank you for taking the time to read this letter. There are several support groups listed which offer various types of assistance but all work toward improving life for children and adults with congenital heart defects. If you use your writing skills to contact local legislators, your time to read about CHDs, forward this to a newly diagnosed family, or donate financially, you are an important part of the care for hearts that I believe is a true emphasis of Valentine’s Day.

ONE DAY. ONE MISSION. 100 EVENTS.

February 13, 2010

This Valentine’s Weekend.  Put your heart in the right place.  Where your heart on your sleeve.  And Open Your Eyes.

One hundred global events mark the wind-down of Congenital Heart Defect Awareness Week, reinforcing the crusade against heart disease and heart defects in children as a year-round 24/7 battle.

On Saturday, February 13th – just as CHD Awareness Week 2010 is wrapping up – 100 events will be happening in tandem around the world.

There are no rules – these events are personalized to (and in honor of) advocates everywhere who are the front lines want to share what they know about the world’s most common birth defect.  One in one hundred babies born are afflicted with a congenital heart defect.  Personal stories, Newborn Screening, Medical Advancements, Heart Heroes and Rockstars.  It’s time the world heard what’s happening, what’s being done, and we can do.

Heart defect awareness is 24/7/365.  Every day is a good day to Know more and Do more.

1in100 EVENT ROSTER (updated weekly)

1. Annamarie & Paul Saarinen

In honor of Eve Isley and those who Do More everywhere.

Minneapolis, Minnesota

2. Rachel Boyum

In honor of Maggie Stewart

Lakeville, Minnesota

3. Amber Teater Schmidt

In honor of the 3rd anniversary of Kyleigh’s Open Heart Surgery

Lexington. KY

4. Kristina Daugherty

In honor of heart warrior Aiden (tricuspid atresia – 6 months old, glenn scheduled for March 2010)

St, Louis, MO

5. Kristin Uchida Collier

In honor of Khloe and everyone dealing with CHDs

Denver, CO

6. Kristi Bono Pena

LOCATION

7. Karla Hider

In honor of angel Isla (dilated cardiomyopathy and mitral valve regurgitation)

Cambridge, United Kingdom

8. Kristine Brite McCormick

In honor of angel Cora

Indianapolis, IN (??)

9. Jessica Twigg

In honor of angel Ethin

Michigan

10. Lisa Roseman Brancato

In honor of

Chicago, IL

11. Michelle Shannon

Omaha, NE/Council Bluffs, IA

12. Amber Whitman

In honor of Addison and Cora

Franklin, IN

13. Isabelle & Ron Ouimette

In honor of Andre

Danville, MA

14. Melissa

INFO
Sacramento, CA

15. Holly

(son – TOF, now 28 months)

Burlington, VT

16. Abby Whaley

In honor of angel Allie

Raleigh, NC

17. Laurel Hubert

In honor of Lyla’s first heart birthday

LOCATION TBD

18. Ann Thompson

In honor of Eve

Emmons, Minnesota

19. Josh & Jenny Madigan

In honor of Maddie and Eve

Rosemount, Minnesota

20. Audra Grunwaldt

In honor of Ben

Souix Falls, South Dakota

21. Grete Lekanger

In honor of angel babies

Oslo, Norway

22. Richard & Carolyn Gray

In honor of hearts everywhere

Carmel, CA

23. Bonnie Burkert

In honor of Eve

Los Angeles, CA

24. Mary Calvano & It’s My Heart Michigan

In honor of Drew, CHD Warriors and Angels

TBD, Michigan

25. Levi & Tracy Beers

In honor of angel Aiden

Denver, CO

26. Tracy Dougherty

Centerville, Iowa

27. Kelli Carlson

In honor of Will

TBD, Rhode Island

28. Doug & Gretchen Kingland

In honor of Eve

Northwood, Iowa

29. Melissa Hingos

In honor of Jack & Eve

Raleigh, NC

30. Rene Saarinen

In honor of Eve

Hibbing, MN

31. Tom Reynolds

In honor of friends fighting CHD

Eagle, CO

32. Holly Anderson

Brooklyn Park, MN

33. Kris Huson

In honor of Eve

Minneapolis, MN

34. Monique Bowersox

In honor or Eve

Rochester, MN

35. Tony Weisshauer

Des Moines, IA

36. Denise Sanders

In honor of Michael

Clearwater, FL

Want to host a 1in100 Event?

Post here – Or email annamarie@1in100.org – Or post on Facebook.com/1in100.

Name, Location, Time of Day, in Honor of

More to come!