Preventing Infection 2

Today, I want to talk about Vaccines and their role in keeping CHD children alive and healthy. 

CHD children are a conundrum when it comes to vaccines, while we are at a higher risk of certain infections and a higher risk of complications of still more illnesses, we are also at a higher risk of complications from the vaccines themselves. So rather than just following along with the recommendations meant for healthy individuals, parents and pediatricians need to be careful about which shots to give, when, and how spread out or close together in time they are. 

Remember that CHD children are exceedingly prone to developmental delays, not just in terms of cognitive and motor skills, but also in terms of physical growth and development. That includes the development of the immune system and metabolism. The things we use to deal with diseases, vaccines, and chemicals that enter our systems. This is why someone with congenital heart disease may need to wait on some vaccines or spread out vaccines that would ordinarily be given at once or close together.

There are also certain things which may make some vaccines totally inappropriate. I for one, suffered a few seizures following my 1st heart surgery. This makes the Pertussis vaccine, which protects against whooping cough, which is known to cause seizures in some cases, totally unavailable to me, the rest were delayed to keep pace with my development, not the "normal" curve that I wasn't on. 

At the same time, CHD also makes some vaccines that children normally don't need, a must. The recommendation for people with chronic heart/pulmonary disease is that they receive a dose of the PNR Vaccine, which protects against the most common strains of bacterial pneumonia, every 5 years as children, followed by one booster after age 18 to be followed by the newer Prevnar13 vaccine a year later. This final two shot sequence is repeated one last time after age 65. I actually just got my adult PNR. 

It is also of particular importance to keep up on one's flu vaccinations, as a severe case can turn into viral pneumonia. 

Endocarditis and the Wider Threat of Infection, How to Prevent it, and how to Cope with Preventative Treatment Measures

Endocarditis: A CHD Survivor’s Worst Nightmare and what a Cardiologist or Primary Care Doctor Should do to Prevent it.

This is a big one. Endocarditis is basically a viral or bacterial infection that is attacking the heart directly. We, people with CHD, are both more likely to suffer from endocarditis and less likely to survive it. The microbial menace in question will eat away at the heart muscle which can cause holes and defects where they didn’t previously exist, causing the heart to work less efficiently and possibly fail.

Since the site of the attack is also the center through which the entire blood supply is pumped, and endocarditis infection can also easily turn into sepsis which is potentially fatal for anybody.

There are a couple of steps that can be taken to help prevent endocarditis in the first place.

1.      Keep a CHD survivor, particularly if they are currently in need of treatment, immune compromised, very young, or very old (there are a few…very few), away from anyone with a serious or highly contagious illness of any kind. 

2.      Put them on prophylactic antibiotics, whether this is situational or a regular thing will need to be determined by the doctor prescribing the medication.

I have been on Amoxicillin, situationally, for as long as I can remember. Every time I go to the dentist for example, I down four Amoxicillin pills an hour before the appointment. The same was true when I got my ears pierced. Anytime there is a plan to expose my blood to potentially less than sterile instruments I have to take it. 

Personally this is one of my least favorite things about this. Not that there’s much to like about growing up with birth-defects but most of it has reached a point where no part of my mind even suggests protesting. It simply is. This, for some reason, as necessary as it is, has not become one of those things. The side effects are annoying. It turns my stomach into a churning vat of acid and drains my energy so that by the time whatever I took it for is over I just want to sleep for 2 to 3 hours.

The worst thing you can possibly do is to take it on an empty stomach. It makes the stomach churning that much worse if you do that. What I have found really helps, is to eat a milkshake before taking it. Since milk is a base substance, it combats the acid somewhat, really any food will help, but I have found milkshakes to be the best thing. 

 If you notice that you (if you are yourself a survivor) or a CHD person you know, is sick and worsening quickly or fading fast, get them to a doctor whether that means a visit to an Immediate Care clinic or an Emergency Room. Go!

CHD: The Facts

CHD, the Basics

Congenital Heart Defects are the most common birth-defect in the world. Affecting 1 in 100 live births across the globe.

There are over 40 known varieties, ranging from the ones that don’t really damage the function of the heart all the way to those that make a heart transplant a matter of survival. Most are congenital flukes, with environmental risk factors including Mother’s Age, Use of Fertility Hormones, Conception through IVF procedures, Smoking While Pregnant, Paternal exposure to toxins such as Agent Orange, and use of some prescription medications while pregnant, playing the biggest role.

Only a few forms of CHD have a known genetic factor, one of these is Dilated Cardio Myopathy, which usually results in heart failure prior to the age of 10.

CHD and other defects tend to occur in clusters, this is particularly true of the less serious varieties. There can be multiple CHDs in a single person (as was true in my case), there can also be issues with the function of other organs or other congenital disorders in addition to one or more CHDs.

People with congenital heart defects are much more likely than the rest of the population to have ADD, ADHD, Dyslexia, OCD, other personality and mood disorders, and Autism.

40% of people on the Autism spectrum have at least one CHD, and 60% of CHD survivors find themselves on the Autism spectrum, though the nature of this correlation is not yet understood by science.

Survivors who don’t need to undergo full transplants will always walk a thin line when it comes to athletic activity. On the one hand, maintaining a healthy weight and doing cardio exercise to keep the heart strong and healthy is essential, on the other hand though, physical and emotional stress in excess is a danger. Most people face the threat of heart attacks and cardiac arrest episodes in later life, but for us they can happen at any age. It’s a delicate balance that requires listening carefully to what one’s body is telling them it can and can’t handle and careful monitoring of a more scientific nature by a congenital cardiologist.

Author's Introduction

Hello, my name in Ana, I’m a 21 year old university student. I manage A’s, I play Tennis, I write, I read fantasy, historical, and mystery novels, I play tennis, and I was born with 4 Congenital Heart Defects. These are structural or electrical problems with the heart and major arteries.

Congenital Heart Defects effect around 1 in 100 live births across the world, in the United States, this rounds out to 40,000 babies each year on average. The truth is that CHD effects and kills more than twice as many children than all forms of childhood cancer combined and receives less than 10% of the research funding from the US government that childhood cancer does.

Until the late 80’s hardly anyone with a serious form of Congenital Heart Disease survived long enough to tell their story. In the last 20 years however, the mortality rate for CHD has fallen from 50% to about 35%, this significant improvement in the survival rate means that for the first time in history, there are more CHD survivors who are now adults, than we have CHD babies being born.

The improvement is still young however, which is probably why I can find blog and blog, and website after website talking about CHD from a parent’s and activist’s point of view, but find it almost impossible to find this story told from the perspective of the child, the survivor themselves. I hope this blog will change all of that.

I was born at the beginning of the shift, in 1994, when I was 1 of the 40,000, the chances of me seeing my 18^th birthday were 50/50, and I almost died more than once along the way. I have seen the inside of at least 5 different Pediatric wards in three different states, I was medivacked from one hospital to another at least once, and endured 3 heart surgeries over my first 11 years of life.

I am one of the fortunate, I am not in a wheelchair, I did not suffer severe brain damage, I am now healthy enough to participate in the sport of my choice…I can live a fairly normal life. Because of my good fortune, I am able to share with you now, the long road it took to get to this point.