Posts filed under ‘CHD Awareness’

I Never Knew I Could Feel This Way

We’ve lived with you for ten years now, an uninvited and unwelcome guest in our family.  We had no choice really–You forced yourself upon us when our beautiful baby girl was born with you altering her perfect heart–breaking it in a sense.  Although you aren’t a guest we would wish to have, I have learned volumes from our journey with you.  I’ve learned about emotions that sounded nice on paper but never really knew what they felt like.  Emotions like grief, anxiety, fear, hope, faith, communion, exultation–just to name a few.

But last night, you taught me a bit about a new emotion, one I have never known with such force until then–hate.  It really is an ugly word.  I’ve never liked it and I’ve never been one to hate anything or anyone easily.  But last night you showed me that hate does live within me.  I guess I could use another word that didn’t sound so harsh, to make myself feel better.  I could call it loathing, dislike, disdain…but really it all boils down to hate.

Abby poked her head in the bathroom at bedtime, while I was helping her little brother’s brush their teeth.

She made the comment, “Today is 31 days from my heart surgery.”  She made the comment so matter of fact, like it was normal.

I acknowledged her comment, using the positive reinforcement we have been using to deal with you lately, “Yep.  Won’t it be great to have it all done?”

She shook her head, “No.”

I could see she wanted to talk.  So her daddy and I ushered the boys to bed and took Abby to her room to talk.  She began talking about how scared she was.  She began telling me that she was scared of being in the hospital, where it is big and scary.  She is scared of being alone, waking up and me not being there.  She is scared of pain…she is scared of so many things.  We reassured her.  We promised she wouldn’t be alone.  We promised that I would be there when she woke up, no matter what time or how long I had to wait for her to wake up, we promised her that the doctors and nurses would make sure she had all the medicine she needed not to be in pain.

Suddenly, she broke down into tears….despairing, grief filled tears.  She sobbed, “I don’t want to do this!  God has promised us that he won’t give us anything we can’t handle and I can’t handle this.”

She layed her head in my lap and cried…and I cried too.  I couldn’t hide behind my optimistic “it’s going to be alright” face.  And at that moment I HATED you.  I hated you for picking on my sweet daughter, a girl who lights up the room when she enters.  A girl with the faith of Job.  A girl who doesn’t deserve to be bullied by you.  You broke down my defenses and made me feel that I was letting her down.  When she saw me crying she got even more fearful and began questioning, “Mom, why are you crying?  Am I going to be okay?”

You.  Picked.  On.  The.  Wrong.  Girl.  You see, I don’t believe in chance or fate, and I don’t believe you are with us by accident.  You are our trial and although Abby looks small and fragile…her soul and heart is as mighty as they come.  She will overcome you along with thousands of others who are fighting against your ugly devastations.  You hurt and rob and take…but we will never stop fighting against you.

Although you have taught me so much about life and living and feeling and it is true, I wouldn’t trade those lessons, I don’t want you to hurt others.  I don’t want another mother to carry the grief of losing her child to you.  I don’t want other parents to suffer through surgeries and hospital stays.  I don’t want another child to ever have to say through sobs, “I don’t want to do this!”  So, for now, consider this a new level in our journey with you.  I accept this trial you have thrown in our way…I will learn from it and grow in ways I would have never thought possible, just as I have for ten years.  But I will never stop fighting against you, CHD.

May 2, 2010 at 8:24 pm 7 comments

The End of A Beginning

CHD Awareness week came and went.  This year, I really wanted to help.  At the end of it all, I feel a world away from the awareness I hoped to raise.  I blogged all week, posted facebook statuses about CHD, was successful in getting Governor Herbert of Utah to issue a proclamation as well as Mayor Godfrey of Ogden, Utah.  Mayor Godfrey was kind enough to present his proclamation to our daughter.  I read about congenital heart defects and talked about it….with lots of people who already know about it.

What I was NOT able to do that I really wanted…

*Get media attention.  I contacted numerous members of the media, hoping they would cover the proclamation issue or write a story about CHD or cover it on the news.  My queries fell on DEAF ears.  I saw lots of cute stories in our local paper about a darling newlywed wife who covered her husband’s car in construction paper hearts, fun crafts to make for Valentine’s Day, a local Chocalatier who was named as one of the state’s best…lots of cute stories about Valentine’s Day, but not a word written or spoken about CHD!  Even our mayor’s office attempted to contact the media, they ignored his query just as they did mine.

*Sponsor an event.  I came across the 1 in 100 group too close to start anything.  I thought about a balloon launch, I read about a family who has teamed up with a local restaurant to offer 20% off dinner and raise proceeds on February 14, I heard about a friend who sets up a table at our Children’s Hospital…but I did not sponsor an activity.

*Get as involved as I wanted to.  I’ve read lots of posts and discussion boards this last week with lots of people complaining about how hard it is to gain media attention, get famous spokespeople or endorsements from celebrities, get legislation even introduced let alone passed.  I’ve heard that some feel there are way too many small localized groups and what we truly need is one large organization.  The American Heart Association is certainly large and national, however; they focus more on adult heart disease.  Celebrities, epsecially women, attend the annual heart truth red dress fashion show, in support of heart DISEASE which is much different than heart DEFECTS.  Likewise, the March of Dimes devotes a small portion of their time and interest to CHD, but focus more on premature birth and a generalized fight against all birth defects.

So, what is needed?  Where do I go from here?  If you had a successful CHD week please let me know what you did and HOW you did it.  If you have a successful non-profit organization that supports congenital heart defects, congenital heart defect research, support to patients and families affected by CHD, sponsoring heart surgeries for needy individuals and families…anything that is successful, please let me know.  I hope to rally the troops, continue my fight against this killer, and devote more of my time to overcoming and defeating Congenital Heart Defects.

February 16, 2010 at 4:40 pm 3 comments

Letter From a CHD Survivor

I look like any other girl. I like all the things the other kids like, Soccer, Basketball, tag, and video games. But I’m a little bit different than all of the kids. I’m the daughter of Nicole Wardell. I’m ten-year- old and I have Tetralogy of Fallot, a heart defect. It affects my life a whole lot. It isn’t horrible but it’s not too fun either.  If I could write a letter to all the kids in the world with CHD and their families, this is what it would say.

Dear children with CHD,

I’m Abby and I have CHD just like you. I’m sorry to say having this heart defect is not easy. It will affect your life a lot. I know you must have more trials than most of your family. In this letter you will not only find advice on how to cope with it but you will also find how I feel about it.

Are you made fun of just because you’re short? Don’t worry I deal with it too. Even though the teasing can get tiring I’m 10 years old and I can still be carried by my parents. So If  I can still be carried you can probably be carried for a long time too. It will be a thing that I miss when I finally get too big.

Do you run out of breath easily? I do. What I usually do is stop and take a rest. Your friends might think that’s weird but tell them why you need to stop and they will understand. You probably won’t like that but in the end you’ll be happy you didn’t faint on the playground.

Do you tend to stay sick longer than the other kids? You guessed it, I do too. Whatever you do, don’t worry. It’s normal because of your heart. It isn’t fun but you’ll just have to live with it.

Having this heart defect isn’t too fun, but it isn’t always bad.  My life is a lot like my friends.  I like to read books, play the piano and the guitar, listen to music, play video games, and lots of other things.  I get good grades in school and like to shop for clothes.

Doctor’s and nurses can do a lot to help us overcome our heart problems.  This summer I have an open heart surgery. I’m very scared. Even though I don’t want to have it, I have to. It will be yucky, no doubt about that but, my heart will be fixed and I won’t have to deal with lots of these problems anymore.

Those of you reading this have survived the disease or know someone with the disease. Others are not so lucky. It is very sad but too true that thousands of kids around the world lose their lives to CHD every day. So please give a helping hand to those in need. I hope you know you’re not the only one who deals with these trials.  Let’s try to deal with it together.

Your Friend,

Abby

February 12, 2010 at 11:06 pm 14 comments

Congenital Heart Defects Products That Raise Awarness, Support, or Educate

There are actually quite a few items out there in the way of congenital heart defects. Some of these products are used to raise money for research, education, sponsoring surgeries, and supplying support. Other products are there to help raise awareness while others are there to educate and inform those who live with CHD. I thought that this week was a great week to present some of those products. I hope that you’ll check some of them out, and even consider purchasing some.

This organization, Congenitalheartdefects.com  has their own publication company.  They put out some great products.  The Baby Hearts Press Store has a special running the month of February as well in honor of CHD Awareness.  If you purchase one of their books, you get a free Celtic Heart pin.  Their book titles include:

“The Heart of a Mother”

“The Heart of a Father”

Both the above books contain essays and personal narratives of what life is like having a baby with CHD.

“My Brother Needs an Operation” — Children’s book about CHD and surgery.

“The Heart’s Gift” by Jodi Davis

“Hypoplastic Left Heart Syndrom: A Handbook for Parents” — This book is out of print but can be purchased as a PDF file.

Visit the link above to go to Baby Hearts Press Store.

Congenital Heart Information Network

The Congenital Heart Information Network has some great shopping on their website as well.

They have beautiful hopeheart necklackes that are silverplated and are absolutely gorgeous.  Follow the link above to purchase one and help in the fight against CHD.

It’s My Heart has some great products that everyone is sure to enjoy!

Their products include T-Shirts, Sweatshirts, Hoodies, Onesies, Bibs, and hats.  All come in a variety of colors and styles and come in sizes from newborn to adult.  They also have Tote bags and messenger bags, ornaments, license plate covers, teddy bear, BBQ apron, mousepad, tile coasters, wall clock, keepsake box, throw pillow, mugs, ceramic travel mug, water bottles,  buttons, badges, magnets, boxer shorts, greeting cards, postcards, stickers, and bumper stickers!!!!!!!  Definitely check this website out for all your CHD shopping!!

Saving Little Hearts of Nashville, Tennessee also has some great shopping.  They have calendars featuring the photos of CHD survivors and angels.  Their 2010 calendars are currently 50% off!  They also have Maternity T-shirts, Infant and Toddler T-shirts, hoodies, sweatshirts, hats, BBQ Aprons, buttons, magnets, stickers, messenger bags, tote bags, journals, stationary cards, wall clocks, mugs, and PET Gear!  So, your dog can raise awareness too!

This book My Heart Vs. The Real World is stunning!  If you have a child, friend, family member or are a CHD survivor yourself, this book is a must have!  The author Max S. Gerber is an adult with CHD.  He is a fabulous photographer and this book is wonderful!  Please visit his site above and pick up a copy of this book for yourself.  You won’t be disappointed!

The 2004 release of the movie Something the Lord Made is exceptional.  It can be seen on HBO this month.  It is the touching story of the doctors, one white and one black, who pioneered the surgery that saved the lives of Tetralogy of Fallot babies.  These “blue babies” were generally admitted to the hospitals to die.  These doctors saved their lives.  The show is amazing and I found myself in tears of gratitude at the conclusion, seeing as they saved my daughter’s life.

I would also recommend the music of pianist and songwriter Paul Cardall.  Paul was born with Tricuspid Atresia.  He has had open heart surgery and a heart transplant recently.  His story is amazing and touching.  His courage is inspirational.  His music is flawless and beautiful and will touch your heart.  He runs a non-profit organization to help those living with CHD.

This list is certainly not all inclusive.  Many great organizations and individuals have products for CHD.  If you know of some I have forgotten…leave a comment below!!

February 11, 2010 at 9:57 pm 1 comment

Healing Broken Hearts!

February 10, 2010 at 9:12 pm Leave a comment

Pulse Oximetry Testing Can Save Lives

In preparing to write this entry, I began my research as I normally do, by googling.  I have blogged about pulse-ox testing before, and again feel discouraged after my research.  The facts are this:

8-10 in every 1000 babies born will have a congenital heart defect (the numbers concerning this fact are all slightly different.  In fact, my state governor’s office was told by the State Health Department that the “numbers were slightly inflated”.  I have used the more conservative number so as not to upset anyone.  Either way, nearly 1% of all live births are affected by a heart defect). (cited from WebMd Heart Disease Guide)

Approximately 36,000 babies are born each year with a CHD.  (American Heart Association Website)

Less than 10% of CHD’s are diagnosed before birth.

This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. (Children’s Heart Foundation)

Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research. (Children’s Heart Foundation)

The facts go on, the statistics continue.  Pulse Oximetry testing has been around for some time now, and saves lives of children with heart defects.  The test is non-invasive and simple.  A little monitor with a red laser on each side is pressed over the toe or finger of the baby, the oxygen levels are then tested in the blood stream.  Research has been done and continues to be done on this method of detecting birth defects.  Many, many researchers, scientists, and hospitals advocate for the routine and mandated screening of CHD’s of all newborns.  So, why is it not done??????  Most hospitals actually have this equipment already.  Why has the health department not made this part of the screening of newborns.

Here is where the semantics come in.  Yes, semantics.  Word games, really.  I could give you all the reasons opposing the testing.  The tests so far have not been conducted on a wide enough sampling of patients.  The tests produce false positives, resulting in unnecessary, expensive tests.  The research findings are provocative but inconclusive.  Every year these semantics continue, babies die unnecessarily.  Babies who could be given a chance at life by being treated for their undiagnosed CHD.

Many tests are already mandated, including PKU, and others and yet, CHD’s affect more children and more babies die from CHD’s than any other birth defect than the conditions already being screened.  Don’t get me wrong, I am certainly not downplaying the serious nature of other birth defects.  Every birth defect is a tragedy.  So why not test for the ones that can be tested for?  Some in the medical field are concerned about the added stress to parents of newborns if the  test registers a false positive and the added costs of expensive Echocardiograms.

So for now, pulse ox testing is not mandatory.  Newborns are not routinely screened.  But, you can ask for it.  You can make sure that within 24 hours of life, your baby is screened for an undiagnosed heart defect.  Chances are about 1 in 100 that your baby won’t have CHD, but if you are the 1 in 100, early diagnoses and treatment helps produce a positive outlook for years to come.  Ask for a pulse ox screening before you leave the hospital.

Contact your legislators and ask them to introduce a law that will mandate pulse ox testing.  Visit this link to my last post on pulse ox testing for more facts and the harmful ways some in the medical community undermine the importance of this kind of legislation.  Visit this link to hear the tragic yet courageous story of Kristine and her beautiful baby Cora, who had an undiagnosed CHD.  Help her spread awareness and fight the killer which robbed her of her precious baby.

Help save babies like Cora and thousands of others by getting involved in the campaign to mandate pulse oximetry newborn screening.

Cora

February 9, 2010 at 11:51 pm 1 comment

Consider Donating Blood This Week

This is the lifeline of a child undergoing open-heart surgery.  My daughter required three units of blood  and two platelet transfusions.  Without it, surgery would not be possible.

Here is the catch…Infants and heart patients are more likely to die or suffer other serious complications when blood that is over two weeks old is used for surgical transfusions.  So, while the American Red Cross receives close to 15 million units each year, very little of that is suitable for heart babies and patients, as much of their blood is frozen and stored.

Our local children’s hospitals here in Utah use a company called ARUP.  The blood is never frozen and is “fresh”, meaning it has only been refrigerated and is less than two weeks old.

Researchers are not certain why stored blood does not assimilate into the body and heart as well in heart patients.  Some researchers believe that the blood loses vital oxygen carrying chemicals, thus delivering oxygen depleted blood.  Others find that frozen blood moves through the body more slowly because red blood cells become rigid during freezing.

According to an MSNBC article published in 2008 researchers studied the records of 6,000 patients who received transfusions.  Half received old blood, averaging 20 days old, while half received “new” blood, averaging 11 days old.  The findings concluded that the one year survival rate of patients given old blood was 89% while the one year survival rate of patients given new blood was 93%.

Additionally, complications were more frequent in patients with old blood transfusions.  The complications included  kidney failure, blood infections, multiple organ failure, and needing ventilator care more than 72 hours after surgery.

While the FDA finds the results “provocative”, feeling that the study needs further investigation for any finality, Surgeons have felt for years that new blood is better for heart patients.  Hospitals which perform open-heart surgery on children are trying to reduce the amount of blood transfusions needed during operation, however; open-heart surgery generally uses blood products.

While this article is informative, especially for CHD patients and families…it serves an alternate purpose as well.  This week being CHD week, what better way to support CHD by donating to a blood bank that supplies blood to hospitals where open-heart surgeries are performed?  I’ve made my appointment for Wednesday, February 10 at our local ARUP services.  Will you join me?


For more information on ARUP in Utah, the only supplier to Primary Children’s Medical Center and Shriner’s Childrens Hospital, visit their website here.  You can also follow them on facebook.  This week they are in need of platelets, although your first donation you can only give whole blood.  They also need A+, O-, and B+ types, although any type is welcome!!  Consider organizing a blood drive also.  What better way to commemorate CHD awareness week than by giving a donation of lifesaving blood?

Contact ARUP today at:

Sandy Facility

9786 Sandy Parkway (500 West)
Sandy, UT 84070

Research Park Facility

500 Chipeta Way (Building 580)
Salt Lake City, UT 84108

Schedule an Appointment

Please call (801) 584-5272 to make an appointment to donate.

February 8, 2010 at 11:04 pm Leave a comment

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