Tag Archives: TGA

7 Pieces of Advice for CHD Parents

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My two cents worth for parents of a child with CHD or any other serious illness

1. Don’t be afraid to ask questions – and the same question numerous times at that! You need to know everything you can about what is going on. No question is a stupid question.

2. Speak out if you think something is wrong – you know your loved one best.

3. Join a support group when you feel ready – we didn’t feel ready until after the surgery because it all came on so suddenly. Not only can you recieve support, but give it as well.

4. Ask for help when you need it.

5. Accept help when it is offered – you need someone to lean on and they want to help in any way they can.

6. Cherish every moment.

7. Treat your child as normally as possible – encourage them to experience life to its fullest capacity.

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7 CHD Statistics

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Here are 7 statistics taken from The Children’s Heart Foundation

1. Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

2. Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.

3. More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

4. Congenital heart defects are the #1 cause of birth defect related deaths.

5. There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

6. This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

7. In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

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7 Reasons I am Happy to be a Mom to a Child with CHD

Seems like a bit of a funny title – no one is really happy to be the mom of a child with a defect or other health issues and challenges, but joy can be found even in the hard times.

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1. I take more time to ENJOY the children rather than worry about whether or not the dishes are done.

2. I have a closer relationship with God, my husband, and family.

3. I have a new appreciation for life and the wonder of how glorious it is.

4. I don’t take as many things for granted – I realize every moment is a precious moment that can be lost and never retrieved

5. I have met a whole lot of neat people that I wouldn’t have met otherwise. Lets face it – no one WANTS to be in this situation but great friendships are formed because of it.

6. I remember to snuggle a little longer, and to never let the kids leave without a hug (they will love that as teenagers, won’t they?)

7. I realize that when I lack the strength to carry on, the Lord picks me up and carries me the rest of the way.

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7 Frequently Asked Questions

This post is borrowed from th CHD blog, but I thought it would be a good one to share.  This FAQ is taken from a fact sheet provided by the American Heart Association. The full fact sheet, if you are interested, can be found here.

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1. What is a congenital heart defect?

Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

2. Who is at risk to have a child with a congenital heart defect?

Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

3. How many people in the United States have a congenital heart defect?

Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.

4. Why do congenital heart defects occur?

Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.

5. How can I tell if my baby or child has a congenital heart defect?

Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

6. How serious is the problem?

Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.

7. Are things improving?

Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.

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7 for 7 – 7 Strangers Who Saved My Son’s Life

I missed writing during CHD awareness week (Feb 7-14) while it was on my mind, I was busy with many other things and writing has been a bit of a challenge, though I am trying to do better.  Then, this morning I was making my much needed rounds to all of my friend’s blogs that I have been so derilect in reading and on Emily’s blog (featuring her son Gabe) I came across this awesome blog:

chda

They did a really neat set of awareness posts where each day for 7 days they posted 7 things centered around CHD awareness, etc. So, I decided that even though the official week is past, I would like to do the 7 for 7 myself. So here is my first set of 7:

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7 Strangers Who Saved My Son’s Life

1. The emergency room people -they immediately pounced on Jacob when our nurse rushed him across the street to the hospital. I never saw people move so fast. We were later told by our cardiologist if it hadn’t been for their fast work Jacob wouldn’t have had a chance.

2. Our Transport Team – the ambulance came first and when it was decided that the ambulance would take to long and Jacob wouldn’t survive the trip the helicopter was called out. I don’t remember his name, but one of the men on the team stopped in at the PICU from time to time to check up on Jacob’s progress – it sure meant a lot.

3. PICU nurses – while there was an army and they were wonderful there was one named Bonnie who not only helped save our son’s life, but saved ours as well with her thoughfulness, caring, and spectacular advice. She helped us deal.

Also, a PICU nurse whom I think might have been named Chris. He listened to me. When he came on the night shift after Jacob had been extubated for most of the day (and his lungs collapsed)and I told him the Jacob’s color was off and his breathing wasn’t normal, he listened and got moving FAST.

4. Blood Donors – I have a new perspective on giving blood. If it wasn’t for people who donate blood we wouldn’t have Jacob. He had at least 2 transfusions which saved his life.

5. Our Surgeon, Dr. Iguidbashian – he sacrificed his Easter holiday to perform a surgery that couldn’t wait any longer.

6. Our Cardiologist, Dr. Legras – his quick work when we arrived at the PICU kept Jacob alive and stabalized him.

7. Jatene and Mustard In 1975, Dr. Jatene succeeded with the first arterial switch operation for the type of defect Jacob had (Transposition of the Great Arteries). The Jatene procedure, or arterial switch, was pioneered by Canadian cardiac surgeon William Mustard and it was named for Brazilian cardiac surgeon Adib Jatene, who was the first to use it successfully. 30 years later, my son is “fixed” because of their research. This is why advocacy is so important – because awareness of heart defects will lead the public, government and corporations to fund research. And research can and does lead to finding ways to repair more hearts. (borrowed from the blog that started the 7 for 7)

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Link to Published Article

For those of you interested in reading my article that was published in the Ensign here is a link to the article. It is quite short as there is limited space in a magazine, etc. So don’t be surprised by its brevity. 🙂

The article is about an experience that my husband and I had while our son, Jacob, was in the hospital.  (If you are not familiar with Jacob’s story you can find a link to it on the side bar under heart kids)

For those of you who are not familiar with the publication, Ensign, it is a magazine that is published by the Church of Jesus Christ of Latter-day Saints. 

Thanks everyone for your support and interest! 🙂

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Filed under CHD, Heart, Jacob, Religion, TGA, Writing

Busy, Busy, Busy – A Random Tuesday Post (because Friday is so far away)

I keep meaning to write and I keep getting swept away in the hectic fun of summer.  I had a prenatal back on the 5th of July – we figured I was about 14 weeks at that point.  Everything went great, but the only problem was that try as she might my midwife could not track down a heart beat.  Before Jacob I would have shrugged and said “we’ll get it next time” but with paranoia attacking me, and with the extra excuse of wanting to be sure of the due date (my due dates have a way of never being what we think they are), we opted for an ultrasound.  So in we went on Sat. the 7th for an ultrasound.  Baby is in fact in there. 🙂 We heard that glorious little heart beating away and got to watch the little tyke wiggling and kicking around like a regular squirmy fishy.  So, with all the fun of seeing thing #5 and hearing the heart beat, I am now at ease (at least somewhat anyway) until the ultrasound at 20 weeks where we will check for defects and the like.  My due date is officially Jan. 3, 2008, so I am 16 weeks this week.

*****

After the children’s great success with the lemonade stand they decided they wanted to do it again last week, only this time they wanted to donate the proceeds to the Children’s Heart Foundation. So work they did – Tuesday through Friday, Friday they actually put in an 11 hour day, I was rather amazed.  By the end of the week those kids had made over $65! We took some out for tithing and expenses to go back to the kids, and had $50 to donate to the Children’s Heart Foundation. (I’ll have more pictures later – we’ll being doing the lemonade stand more in August and then I will get photos of all the kids 🙂 )

Lemonade With Heart

Liz Selling Lemonade

*****

Saturday was the Children Heart Foundation Oregon Chapter’s annual Lionheart Festival and Paul and I were volunteering again.  The kids dumped all their change and money from the lemonade stand and proudly handed it off to a very surprised and elated president of the chapter.  They were even officially recognized during one of the speeches, which thrilled the kids to no end.  We, of course, had a marvelous time volunteering, chatting with other heart parents, and playing to our heart’s delight.  I even got a charming cariacature of adorable Jacob done by an artist volunteering her time and work.  It was also neat to see how the art project turned out, and we now have a poster with Jacob’s artwork on it. 

Lion Heart Festival

(All the yellow shirts are kids, and adults, who have a CHD)

Jacob with his lion's tail

Lion Heart Art Project

(Jacob’s heart that he painted is in the one in the bottom lefthand corner)

Here are a couple of pictures of Jacob at the Lion Heart Art Project:

Lion Heart Festival Art Project 4

Lion Heart Festival Art Project 1

*****

After church Sunday I needed to get a couple of quick things done, and Paul was in a meeting. I kept a tight hold on Jacob and asked the girls to “Please wait quietly and patiently against the wall, I should just be a minute.” Yeah right. I really only did take a minute, but the girls did not wait peacefully and quietly. They were sprawled on the floor on top of each other – noisily. There was another ward (congregation) in session (the chapel of course was closed, but sound does carry, even through heavy wood doors). As I scolded the girls for not listening and disrupting the other ward’s meeting I didn’t realized that I had let Jacob’s hand go as I helped the girls stand up. With horror it suddenly dawned on me that Jacob was not anywhere near me. I looked across the foyer, just in time to see Jacob quietly slipping into the chapel. With a sigh of, “what could possibly happen next”, I sprinted across the foyer and whipped the door open, snatching for that rascally arm, but to no avail. Jacob raced along the back row. The chapel was uncommonely quiet (where are all their kids???) as Jacob drowned the lone speaker out with his calls for, “Dadda”, “Dadda!”, “Dadda?” as he ran up to our usual bench. With confusion he looked at the stranger sitting there. So, he headed for the sacrament table, after all, Dad was sometimes up there, but then hesitated as he saw no one. That hesitation gave me my last scrape of luck as my hand shot out and snatched the back of his shirt collar. Mid horrendous embarassment and humiliation I scooped up the squirelly thing 🙂 and marched myself back down the aisle, across the back and out the door. There were many amused smiles and chuckling eyes, this was, after all, the ward I had grown up in. (Then I went home and cried – don’t you love those pregnant emotions?)

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Filed under CHD, Children, Dot, Em, Heart, Humor, Jacob, Lizy, Pregnancy, TGA

Awesome Heart Books

While this post may carry little interest to those who are not parents of heart kids, I have been meaning to write it for quite some time.  I have recently read and discovered some fascinating books about those who pioneered heart surgery, etc.

The first book is Partners of the Heart by Vivien Thomas.  Some of you might recognize the name Vivien Thomas because of the extraordinary movie, “Something the Lord Made”.  This is the same Vivien Thomas, and this is his autobiography.  Though at times a bit tough to get through all the medical terms and though it doesn’t carry the charm of being written by a trained author it is incredibly and fascinating to read Thomas’s own words about his experiences with Alfred Blaloc and first surgery on blue babies.  It is an astounding and fascinating read.

I will branch off and talk about the movie, Something the Lord Made.  It is based on Thomas’s autobiography and is absolutely wonderful.  It is quite faithful to the true accounts of the autobiography and does a great job of depicting the drama of the first blue baby surgery.  The auto briography rather glosses the drama over a bit, so I enjoyed the emotion that the movie portrayed, etc.  We own a copy of the movie and I have watched it a couple of times, each time having tears brought to my eyes as I think of all we have to thank these great men for who took such risks.  It is an amazing movie and I recommend it to all heart parents – though maybe not right after or before surgery, that might be a bit much. 🙂

The second book is: King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery by G. Wayne Miller. A biography about Dr. Walt Lillehei who was an amazing man who stopped at nothing and broke all the rules of medicine to be able to find a way to fix the broken heart.  With many side stories about other pioneers such as Dr. Werner Forsmann who performed the first heart catheterization on himself.  The author writes a brilliant and engaging story with a complete bibliography and index.  Dr. Lillehei did not gain the expected nobel prize because of some rather poor personal deicisions (not paying taxes, etc) but his story is an amazing one, as well as all the other doctors involved in his story.  A fantastic read.

Lastly is a book about pediatric cardiac surgeon Roger Mee, Walk On Water: The Miracle of Saving Children’s Lives by Michael Runlman.  A fascinating look into the intense drama of pediatric surgeons and the amazing work they do.  A bit tough to read for me because it hit really  close to the heart, but amazing to share int he stories of this great surgeon and others like him.  The author uses A LOT of profanity and for those who find it offensive, as I do, will find a sharpie useful – It is a great book though – especially without the language.  But for those who don’t mind the language, it will be great no matter what.  The author is very dramatic and he really delves into operating room and the tension and drama – it is almost overbearing and I had to concentrate on not picturing my kid, but I am so glad I read it.

I am always looking for more books and fascinating info on these amazing men who worked at the front of Cardiac Surgery, so if anyone discovers other amazing books or resources, I would love to know about them.  I hope those who dive into these books thoroughly enjoy them.  They are hard to find at libraries and local book stores (thought libraries are more likely than local bookstores), but they can all be found on Amazon.com and a lot of them can be purchased for pennies used – that is how I got my copies.  If you read any of them be sure to let me know, I would love to discuss your thoughts on them.

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The “OFFICIAL” Announcement

Yes, the moment you have all been waiting for has finally come.  We had our Heart Walk on Saturday (May 19) and it went really well.  🙂 

We started off by parking a mile away (hey, free parking, can’t complain) and walked to the area of festivities. We checked in, met up with some people we were walking with, and got started on our merry way. The Heart Walk is 3 miles, and I was wondering how the kids (especially Emmy) would do with walking it.

Heart Walk 1

We elected to be at the end of the massive group of walkers, mainly to afford the kids a slightly more leisurely pace, and so as not to hold people up when we needed to stop for this and that.

Heart Walk 2

We crossed over two bridges, this is one of them. We are some distance from the bridge still, but you can see many walkers already on the bridge – the teeny little specs at the bottom.

Heart Walk 3

The kids were thrilled to cross the bridge at the same time as a train – though it was a bit noisy. You could hear Jacob’s “Choo! Choo!” above even the ruccous of the train.

Heart Walk 4

Water break – here is Dorothy in her hot pink cast, she has been coping quite well with her left hand, little determined thing that she is.

Heart Walk 5 - Dot's Pink cast

Our Little Hero

Heart Walk 6

Taking a break from the stroller on Dad’s shoulders.

Heart Walk 6

The girls ended up walking all three miles, plus the last mile back to our car – a grand total of 5 miles. We were so impressed with them, especialy with Emily being only 4 years old. Go Emily!!! 🙂 The walk was a lot of fun and a great success, we can’t wait until next year to go again.

Oh, wait a second, that wasn’t the official announcement you were expecting? Gee…. guess you’ll have to wait just a bit longer (Jacob is upset about something, I need to go find out what).

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Jacob’s CHD Quilt Block

The Congenital Heart Defect quilt project is an ongoing project to promote CHD awareness.  Some time ago we put Jacob’s information in for a quilt block to be made by volunteers in his honor and placed on one of the many quilts.  Each quilt block is dedicated to a person who has or has had some tpe of congenital heart defect.  Currently there are close to 37 quilts completed, each one honoring 42 individuals.  Jacob’s block will be on quilt number 46 – so that gives you an idea of how big and incredible this project is.

All 50 states and Washington D.C. are represented as well as 22 foreign countries.  For more information on this amazing project feel free to check out: The CHD Quilt

Today we recieved an email with a photo of Jacob’s block, which we adore: (with a few edits for privacy sake)

Jacob Quilt Block Edited for Online

The volunteer did a great job of capturing some of his favorite things: dogs, cheerios, and bubbles/baths.

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