written by Heather Osborne

“Something doesn’t sound right.” That is what the midwife said to me as she listened to my baby’s heart at his 25 week check. We were sent immediately for an ultrasound. “It’s just a precaution,” the midwife said. I remember waiting in a room at the hospital for the doctor to come see me. My husband, Martin, had gone out for a snack and I was alone when the doctor finally came. She began to explain to me about this condition called “heart block.” To be completely honest, the whole conversation is a blur. She said that they needed to do another ultrasound in a few days.

You’re probably thinking at this point, “What the heck is heart block?” I had never heard of it. Neither have most people. In this case, I was so grateful for social networking. I immediately found an amazing group of fellow moms who had little ones with heart block.

A fellow heart block momma, Alaina Brown, put it this way: “One of the rarest congenital heart defects called 3rd degree congenital heart block or complete atrioventricular block. Only about 150 babies per year (less than .4% of all CHD’s) are born with heart block. Heart block is primarily a defect with the electrical system of the heart. Most of the time your heart makes two sounds when it pumps, as the top of your heart pumps and then the bottom part sends the blood out of your heart to your lungs and body. The coordination of the top and bottom pumping is dictated by an intricate electrical system. In heart block, the top of your heart pumps but the electrical signal is blocked from being sent to the bottom of your heart. Luckily, our heart has a back-up electrical signal located in the bottom chambers so you don’t instantly die from no blood being pumped to your lungs and body, but it is inefficient, very slow, and cannot sustain life. The damage to the electrical system can also cause changes to the structure of the heart including enlarged ventricles and a dilated aorta. In 10% of cases heart block also leads to cardiomyopathy.”

There is nothing quite like being told there is something wrong with your baby; this little life inside you that your body is meant to nurture and protect. We returned for an ultrasound and found out that his heart block had progressed. There was talk of steroid injections, delivery at 27 weeks, and, the worst words a mother could ever hear, “Your baby might not make it.”

There is a type of treatment for this condition, but it requires a pacemaker. Unfortunately, because each heart block case varies greatly, we didn’t know if this meant Alex would need a pacemaker at birth, two years, six years, or well into his teens. It just depended on how he was coping. It was with this information that we were sent home to prepare for the worst, or the best.

Still, the question lingered. What caused this rare condition in our son? Again, I must refer to the same heart block momma who put it so well: “This heart condition is one of the only CHDs with a known cause, although it is not well understood and there is no way to prevent it. Congenital 3rd degree heart block is caused by autoimmune antibodies from the mother that cross over the placenta and attack the fetus’s heart, causing permanent irreversible damage, typically between 18 and 26 weeks gestation…Even in women with known Lupus and/or Sjogrens Syndrome there is no way to prevent this kind of damage to the fetus because autoimmune diseases are poorly understood and lack effective treatment. Luckily heart block is very rare for women with known autoimmune diseases, only occurring 1-2% of the time. However, once you have one child with heart block your chance for recurrence in subsequent pregnancies skyrockets to 1 in 5 as your antibodies are thought to be more aggressive in some way that’s not understood.”

Thanks to a cardiologist at Yorkhill Hospital in Glasgow, who said, “Let’s wait and see what happens,” Alexander David Osborne was born via elective caesarean section on June 17th 2011 after weekly ultrasounds and echocardiograms. The most amazing words I could possibly hear after he entered the world screaming, were, “His heart is doing fine.” Fine, to me, meant he wasn’t being whisked away in an ambulance to Yorkhill for immediate pacing. He would go to the NICU at our hospital for monitoring.

After five days of monitoring, we came home with an appointment to follow up with the cardiologist. We still see the same cardiologist that told the consultant to “Wait and see” every six months. Alex has not been paced at this point. He is a thriving, healthy two and a half year old with more energy than me at times! Still, the thought lingers in my mind as every appointment draws near, “Will this be the one? Will we be told he will need a pacemaker?”

A question people often ask is, “Will you have more children?” Of course! We are planning for another baby, but this time, we will be taking some precautions. The reoccurrence rate of heart block, again, varies. We have been told anything from 5% to 10% of having another baby with heart block. It is very scary and we have gone back and forth with the idea many times. I know though we are prepared for any eventuality.

If I could give a bit of advice to any pregnant mother, it would be to ask about your baby’s heart during ultrasound. We focus a lot on whether we are having a boy or a girl or if they have any genetic or neurological defects that we often forget to ask the most important question of all: “Is my baby’s heart okay?”