Posts Tagged ‘child’

Ten Feet Tall… and Bulletproof!

November 15, 2010

“People always told me be careful of what you do…” – Billie Jean (1982) Michael Jackson

Here’s a post by blogger Doctor D about growing up as a Sick Kid. Here he is writing about children living with Diabetes, so what are parents of  Cardiac Kids who just hit the teenage years supposed to do? Give them room? Lock them in their rooms? Who knows? I can promise you one thing, life will not be “normal”… after all, what is “normal” to a teenager going through puberty?

Oh, goodness what a time. The hormones are fully in control and you just don’t want to hear a word your parents say. Whatever they want, you try to do the opposite, and you feel just like the title of this post: Ten Feet Tall and Bulletproof. Throw a Heart Defect into the equation and things could get crazy.  Sick Kid? Naw, that ain’t me! I’m just like my friends, I can go where I wanna go and do what I wanna do, and never feel “sick” at all! Medication? Who needs medication? If I miss a dose that’s OK, because I don’t feel any different.

There’s a problem brewing right there. A lot of times, you don’t feel any different when your heart is causing trouble. A worsening heart can steal your energy and your stamina, but not all at once. It does it so slowly that it is hardly noticeable… and then suddenly, you realize that you can’t do what you used to do and your energy level is way down. Here’s a newsflash for our teenage CHDers: You were born with this problem and you will have it every day you live. So you’ve got to pay attention to your health… every day you live. You are right, it isn’t fair. But rather than whine and cry about it and let your Heart Defect win, why not learn how to fight it?

The teenage years are just the time when they don’t want to follow your advice, so you got to get ’em when they are kids, not teens. When they are teens, you are THE PARENT and your opinion carries very little weight. When you and your teen have a conflict concerning their illness, it might pay to follow Doctor D’s advice and have a neutral party step in. So you gotta catch ’em when they are young.

And this leads to an incredible balancing act: exactly how much do you tell a CHD child about their heart? First things first, you don’t want to scare them, but you do want to help them know that taking care of themselves is so very important. Cardiology appointments and checkups and doing all the “little things” right will help them live longer and better. But you don’t want to drop that knowledge on them all at once, or when they are too young, because they will almost certainly start looking at the other side of the coin. It’s an uncanny ability that kids seem to have. And you certainly don’t want to hang the “I’m different!” thoughts on the child – we want him or her to fit in, to be a well-balanced kid who grows into a great member of society. If you approach every new situation with an “I can’t” attitude you’re going to miss out on some wonderful life events. And we don’t want that to happen, either.

It’s almost like a valve: you have to decide how much information they can handle and open up the information faucet just enough. Not too much, and not too little. In a few years when they are older and understand more, you can open the faucet just a little bit more. And hopefully, by the time they reach the rebellious years, they understand enough to know that their health is not the place to issue a challenge to parental authority. They can make you scream, run in circles, and even pull your hair out, but those medications are not to be missed and you see your doctor when you need to. Because you have taught them how important it is.

I do not envy Heart Parents with children on the brink of puberty. Those folks deserve a medal!

CHD and Childbirth

October 12, 2010

“…sometimes, important things get ignored or don’t get said.” – Judge Tolliver, The Jack Bull (1999)

Can a woman with a heart defect bear a child?

The answer is… perhaps. The question varies from woman to woman. Having a defect does increase the chances of having a child with a heart defect, and I am sure that is a “gift” that no parent wants to pass on. Perhaps the better question is should a woman with a Heart Defect attempt to get pregnant?

I can’t answer this question… you need to discuss this with your Cardiologist. Sometimes a defective heart can’t take the stress of nine months of pregnancy. Other times, with the help of a OBGYN trained in high risk pregnancies, the mother can have a child. And there are women who have a CHD who won’t need any extra precautions at all. As I have said before, every heart defect is a little different, and affects the owner differently. A friend of mine should not, under any circumstances, get pregnant… but she and her husband are exploring other options. She’s on her way to becoming a momma, just taking a different path. I’ve met Heart Moms who are really Heart Moms – they’re the one with the defective heart. I’ve met young women who are supremely frustrated because their Cardiologist keeps telling them it would be a bad idea, and I have met childless women who seem to be at peace with their situations.

Any CHDer, but especially a woman thinking of having a child, needs to think it through completely and discuss it with your doctor. Your Primary Care Doctor needs to be consulted, but you really need to consider the opinion of your Cardiologist.  A recent study conducted in Germany showed that nearly half of the women with a Heart Defect had not received any counsel about pregnancy or contraception. And nearly 20% were taking birth control that was contraindicated for them. (In other words, they had a health problem that was listed in the “Do not take this drug if you suffer from…” section.)

The bottom line is that all CHDers – male and female – are best served by looking after themselves. Our health challenges are so specialized that “sometimes the important things don’t get said.” It’s your health, your body, and you have to look out for yourself. The only exception is when you are young; then it’s your parents job to ask the questions. And teach you how to do the same when you grow up.

Even the smallest heart…

June 23, 2009

From Dr. Wes’ blog, Here’s the world’s smallest pacemaker recipient.

Click the link. You have to see this to believe it.

How Moms could help reduce Heart Defects!

May 15, 2009

There is new research from Canada that is showing a lot of potential:  Folic Acid, a form of Vitamin B9, could be a factor in lowering the occurrences of severe heart defects.

Earlier research links Folic Acid to lower occurrences of Spina Bifida and may lower the chances of premature birth, but new studies have shown another possible benefit of Folic Acid.  Researchers in the Province of Quebec studied the rate of serious heart defect births from 1989 to 1998, and again from 1998 to 2005. (In 1998, Quebec mandated that Folic Acid be added to grain products such as pasta and bread).

From 1989 to 1998, the number of children born with serious heart defects in Quebec averaged 1.64 per 1000 children born. While that seems to be lower than the United States figure I usually quote – 8 out of 1000 children are born with a heart defect – it’s different. The Canadian study is tracking serious heart defects, the US number is the total number of children born with a heart defect of any kind. Serious heart defects are usually defined as any of the defects that cause Cyanosis.

In the period before Folic Acid additives was mandated for grain products, the Canadians found an average of 1.64 children out of 1000 were born with a serious heart defect. After the introduction of Folic Acid, the rate of serious heart defects dropped – from 1.64 to 1.47 children out of 1000!

And while the link hasn’t been proven, there is a lot of evidence to show that it is there. The decrease in serious heart defects began to occur at about the same time as a higher level of Folic Acid was introduced into the diet. And the decrease occurred in spite of the fact that more women were overweight when they gave birth and they were having children later in life, both factors that usually increase the chances of heart defects.

While there is no guarantee that any medical condition can be avoided, it makes sense to do everything possible to tip the odds in your child’s favor.  So ask your personal physician his/her opinion about taking Folic Acid during your pregnancy.

Your friend,

Slow down

March 17, 2009

Don’t panic!

That’s the best advice I can give you. When in the middle of a crisis, do not run in circles as if your hair is on fire. Slow down, calm down, take a deep breath, and sort through the situation.

“Slow is smooth, and smooth is fast,” the old saying goes. If you have a large job that has to be done fairly rapidly, the best way to tackle it is to cut it into as many small parts as possible. First I have to do A. Then B. Then C. If C doesn’t work, then I have to choose between D and E. So, what would make me choose one option over another? You think it out and plan it before you have to do it. So when you’re in a crisis, the clock is running and C isn’t working,  you’re already thinking ahead, deciding what comes next. And because you’ve taken the time to think it through and make a plan, the decision is almost made for you.

As the parent of an unborn child with a heart defect, you have an advantage. Hopefully the defect was detected via Ultrasound or Sonogram. The doctors have had a good look and they have a plan. When the child is born, we do this, then we do that. Talk to the parents of some of the older CHD survivors, they never had that luxury. One moment they were the happy parents of a newborn, and a moment later the roller coaster ride began.

So don’t panic. Grab your doctor and don’t let go until you know the plan as well as he does. Have the information you need to make a critical decision quickly.

If the defect was not expected, then everyone is forced to rely on experience. You don’t have any, so you are going to have to rely on the medical staff. Hopefully you and your spouse have had a couple of “What if…?” discussions, so you have a general idea what you want to do. If not, don’t kick yourself – every parent expects things to go wonderfully and may avoid such topics. But have that discussion as soon as possible.

This is not a world that you would choose to be in. But you are here, and you need to learn to deal with it.

“My mom has a funky heart!”

January 9, 2009

Laurie over at A Chronic Dose has an excellent post about having a baby when you are chronically ill. Laurie doesn’t mention Congenital Heart Defects specifically, but a lot of her information can help prospective parents make an informed decision.  It would pay for both partners to read this link, since raising a family requires so much teamwork… especially when one parent could become incapacitated at any time.

The good news is that a woman with a Congenital Heart Defect can have a child! Dr. Carole Warnes of the Mayo Clinic presented a paper and gave an interview concerning Adult CHD pregnancy. But you shouldn’t just throw caution to the wind. An expectant mother with a Heart Defect needs to be monitored by an Adult Congenital Heart Defect Cardiologist or a high risk OB/GYN, and possibly both. There are defects in which pregnancy is defiantly not recommended, and drugs or drug dosages may need to be altered. This is not a do-it-yourself project!

So… where can you find an Adult Congenital Heart Defect Cardiologist? There’s not one on every corner, I hate to say. If you’re an adult living with a Congenital Heart Defect, you really need to consider joining the Adult Congenital Heart Association (ACHA). Membership is free to Adult CHD Survivors, and one of the benefits of membership is access to the Clinic Directory. This directory lists Adult Congenital Care programs across the country; some of them have a high risk OB/GYN on staff, or they can recommend someone.

There’s “stuff”, and then there is interesting “stuff”!

November 3, 2008

UPDATE: Katie has been re-intubated. One the one hand this is worrisome – you never want to go backwards if you can help it – but on the other hand, I always had problems on the third day after surgery. So I’m taking a “Wait and see” attitude. My best wishes to Katie and her parents!

This post is completely and totally disorganized; you could easily title it:

“Things that don’t fit anywhere else”

“Heart trivia”

“Not quite useless information”

Seriously, it is some of those “Gee whiz!” things you happen to learn when you are trying to learn as much as you can about how your heart works. For example:

Three People Might Agree

You got that? Really, it’s a simple way to remember the correct order of the valves in a normal heart. Blood flows first through the Tricuspid valve, then through the Pulmonary Valve to the lungs. After it returns to the heart, it flows through the Mitral valve, and then exits the heart through the Aortic valve. TPMA — Three People Might Agree!

Heart valves are also designed to prevent back flow. If they are healthy and functioning normally, blood can only flow in one direction. A heart murmur is the sound of blood flowing backwards, and is a sure sign of a damaged or defective valve.

The heart itself doesn’t make any noise as it works. The beating sound you hear is actually the valves opening and closing. There are two sounds (“lub dub”) because the Atriums and the Ventricles contract in sequence, not at the same time. (CLICK HERE for a good explanation of the heart sounds, and what to listen for)

An anatomically correct drawing of the heart is backwards – the left Ventricle is on the right side, and the Right Ventricle is on the left side. It’s intentional – it’s drawn as if you are the surgeon, and the owner of the heart is lying on a table in front of you. When shown a “mirrored image” of the heart – left on the left, right on the right – many people couldn’t identify it. That number included a fair percentage of doctors, too. Scary!

A surgeon was once in the hospital room with a young patient, explaining exactly what was going to happen during the surgery scheduled for the next day. To make it easier to understand, he had brought along a drawing of the heart. “I read that hearts are drawn backwards,” the child reminded the doctor. “The left side of the heart is on the right side of the drawing. Don’t forget!”

Total silence. The surgeon was stunned, his assistants speechless at the child trying to tell the experienced doctor about the layout of the heart. Finally someone in the back giggled, and that did it. The whole room roared with laughter.

“Everyone write that down,” the surgeon said to his team. “Hearts are drawn backwards, that’s important to know!”

I heard that story from a doctor while at the Adult Congenital Heart Association (ACHA) Conference this year, I was not the child involved!


I knew that if I told that tale, you guys would think I was the child! Trust me, I wasn’t as outgoing at that age!