Wednesday, September 9, 2009

Another Heart Child

We have been trying to get Brandon on behavioral medications and part of that process is to have an EKG to rule out heart defects before starting him on a stimulant. In June, he had the EKG. It came back "borderline", so we repeated the test. It too came back the same way. We were instructed to take him to our family doctor, which we did.

His pediatrician will no longer be his pediatrician. Our family history of heart defects has turned out to run pretty deep in our families. On Rob's side, his grandmother and first cousin both have heart defects (mitral valve prolapse), on my side, my grandmother had an Atrial Septal Defect, and my niece and nephew have heart defects (mild pulmonary stenosis and Wolff-Parkinson-White Syndrome respectively). And then there was Tommy's complex heart defects. So having all of this information on our family history and knowing we had just lost a child to CHD, this "doctor" looks me in the face and tells me Brandon is fine because he can't hear anything through his stethoscope and that stimulants don't kill kids with heart defects. He had prescribed Brandon stimulants in the past before we knew he should have an EKG. This doctor apparently isn't from that school of thinking and I am so glad we began to treat Brandon elsewhere for his behavioral issues.

I was livid and stood my ground. It took me 20 minutes of persuasion with this man to get a referral to a pediatric cardiologist! I told him I had lost one son to heart defects and I wasn't losing another. He hemmed and hawed and finally begrudgingly gave me the referral.

Yesterday, we saw the PC. Brandon had another EKG in the office, as well as an echocardiogram and physical exam. As soon as the PC heard that Brandon's first cousin had WPW, he said to me "Thanks, I really needed to know about that!" and began to rule it out for Brandon. After 3 matching EKGs, Brandon's official heart diagnosis is Short PR Intervals. Here's a link that explains it better than I can. His PC was able to rule out WPW because he doesn't have the Delta waves associated with WPW, however, he is at a small risk to develop SVT (supraventrical Tachycardia) and we are to bring him back immediately if he ever has chest pains or heart palpitations.

Brandon's PC feels he is okay to be on stimulants or other psychotropic medications. This is a HUGE relief for us! However, because of the risk of SVT, I will be keeping a very close eye on Brandon and making sure he is seen by a trusted physician regularly. One that trusts my mommy-gut.

For the record, a stethoscope CANNOT detect all heart defects. Brandon's and my nephew's were detected by EKG. If all heart defects were detected by stethoscope then no baby would ever be sent home with the family not knowing their child was dying. But it happens all the time because its not a reliable method! If I had not already been a heart mom, I may have never fought to see a pediatric cardiologist. Things could have been very different and turned out to be much, much worse!

Bottom line, trust you gut. Babies need to have a pulse oxymeter test done before they leave the hospital and they need blood pressures checked in all four limbs. If you're pregnant, ask for a Level 2 ultrasound and be sure the technician is skilled in recognizing congenital heart defects. Tommy's heart defect was found by accident. If I had not had other issues during the pregnancy, I would not have had multiple ultrasounds. We had already had our "it's a boy" 20 week ultrasound and his heart defect was NOT detected at that time. If it weren't for the other issues and the tech in the doctor's office stumbling across it we never would have been sent for our Level 2. Tommy's heart defect would not have been detected and he would have not been born at MUSC but at a smaller hospital in the area not equipped for heart babies. More than likely, he would have died.

My complex heart baby may be in Heaven now, but because of him, his big brother was detected with a minor heart defect as well. Had I not been AWARE of heart defects and the many possible ways they hide...Oh that doctor is still burning me up!

Echocardiograms and EKGs are wonderful diagnostic tools, and a pulse oxymeter is a fantastic tool if only more doctors would realize it. For perspective, during pregnancy, a mother is tested for Down Syndrome. The occurrence for Down Syndrome is about 1 in 1000 births. Everyone has heard of Down Syndrome and probably knows someone born with it. There's posters in the OB's office about it and the doctors persuade the mothers to be tested for it during the pregnancy. Blood is drawn and sent to a lab, sometimes an amniocentesis is done. Scary stuff for a new mom! Now, understand that Congenital Heart Defects occur in 1 in 85 births! It's usually detected by a level 2 ultrasound. No blood draws, just a little gel on the belly and an hour of your time. A child with Down Syndrome will have challenges, but a child born with a heart defect could die within hours of birth. Or how about sent home "healthy" only to die days or even years later because their heart defect wasn't detected. Betcha that child "passed" the stethoscope test.


Alicia said...

Wow. First, that pediatrician is a sorry excuse for a doctor. If all heart defects could be detected by stethoscope, why are there Echos and EKGs and cardiologists at all?? What an idiot! And for him to be that way with a mama who has lost a heart baby ~ appalling! I'm glad you have moved on.

And the statistics about Down Syndrome and Heart defects are staggering. We sure need to get the word out about CHD. People need to be as aware of it (if not more) as they are about DS.

Glad that Brandon has been diagnosed and you can be on the look out for him. And glad that he has been approved for behavioral meds.

God bless you and your family.

Susan said...

Frightening to think what could have happened. I'm glad you now know what to watch for and am praying there are no signs of a problem. It can be hard to get good thorough medical care. It should be easier.

Brate said...

According to the American Heart Association, heart disease is the nation's single leading cause of death for both men and women. At least 58.8 million people in this country suffer from some form of heart disease.
And on the whole, cardiovascular diseases (the combination of heart disease and stroke) kill some 950,000 Americans every year.
Still, there are many misconceptions about heart disease: "The biggest misconception is that heart disease only happens to the elderly," said Elizabeth Schilling, CRNP with the Center for Preventive Cardiology Program at the University of Maryland Medical Center.
In fact, according to the American Heart Association, almost 150,00 Americans killed by cardiovascular disease each year are under the age of 65. And one out of every 20 people below the age of 40 has heart disease.
So, it is now a wise decision to keep a constant monitoring of your health. Why to take a chance if we have the option. I was in the similar misconception that heart disease are far away waiting for me to get aged. But to my surprise, I was found to be having a calcium deposit in my coronary arteries. I need to have my advance diagnostic scans due reassure whether something really deadly is waiting for me. Though it was some dreadful going on in my life, but I never felt any kind of discomfort in advanced diagnostic facility. They were having some of the latest diagnostic equipments and non invasive techniques which made me feel safe.

Anonymous said...

He Rene,
Lets please not forget that many children born with DS also have heart problems, many are very severe. also no test is perfect for anything as you know, many children born with DS their parents didnt even know until birth. The DS that you talked about hits close to home for me. When my granddaughter was born she couldnt breath, she had resp distress and before the Doctor worried about helping her breath he blurted out this baby has Down snydrome, wasnt that nice especially since given she couldnt breathe.

Rene said...

I in no way intended to offend anyone with this post. I am also aware that many children with Down Syndrome do have heart defects. My point was that more children are statistically born with CHD and yet there is less awareness. I was informed during all 4 of my pregnancies about DS and was even tested for it. I was not made aware of CHD until Tommy was diagnosed BY ACCIDENT.

Did you find out about CHD before or after your grandaughter was born with one?

By no means do I mean to say DS is a lesser condition. I just feel very stongly that more must be done to detect and treat CHD before a parent is blindsided by an illness that they've never heard of, and yet remains not only the number one birth defect, but the biggest killer of our children.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries