Monday, February 14, 2011

Today is National Congenital Heart Defect Awareness Day!

Not just Valentine's Day ;).

Considering we have six special little heart kiddo's in our family, I thought I'd do a little post about those six special hearts in the order that we learned about their hearts :)

Brianna was diagnosed with an A/V Canal, which has several other names as well...  Atrioventricular Septal Defect or AVSD are the other two common names.  This condition meant that she had a combination of 4 defects.  A hole between the upper chambers of her heart, a hole between the lower chambers of her heart, and two valves that were both malformed.  She had an additional ASD (hole in the upper chambers) and also had a small PFO which I didn't even know about until after the surgery :).  A PFO is also called a Patent Foramen Ovale.  Patent means open, and the Foramen Ovale is a passageway used by a baby in utero to bypass the lungs with some of the body's blood since it wasn't necessary for oxygenation.  An Open Foramen Ovale means that it didn't close as it was supposed to soon after birth.

Brianna had open heart surgery at 5 months old weighing almost 8.5 lbs and looking like a newborn baby.  She did GREAT through the surgery but ended up with an infection before being released to come home.  Then, due to her continued weightloss, we fought for about 5 days trying to get her to eat before we conceded and a feeding tube was placed.  After 19 days in the Cardiovascular Intensive Care Unit, Brianna came home :).  She has done wonderfully since then and now has annual heart checkups.


Our next cardiac kiddo was Emma.  Emma also had an AV Canal, but due to her age, we were initially told after her heart catheterization that surgery would NOT be recommended because of the increased pressures in her lungs called pulmonary hypertension or PH.  The PH is due to the heart functioning incorrectly for 5 years.  We were told in no uncertain terms to bring her home, enjoy her, and she would likely pass away within the next 6 months.  We did go home, but we didn't just sit back and say "ok, then that's all"...  Instead we went to our cardiologist (locally- not the one that did the cath) and she looked Emma over.  Her words were that she met Emma a month previous and now she had a light in her eyes that wasn't there.  She needed that surgery.  Our cardiologist pleaded our case, Emma's case, and a team of doctors agreed to see how things went with a full tonsilectomy and adenoidectomy then scheduled her heart surgery for soon after.

After preparing to be in the hospital for weeks and even up to 6 months, Emma had surgery on a Monday and went home the same Friday!  She far surpassed all odds and is now a happy and thriving 8 year old (almost... Saturday she'll be 8!).  For a girl who they said would never see her 6th birthday, that's a special day to celebrate!  Emma sees cardiology every 6 months due to the PH, but her levels continue to decline and she has only minor regurgitation at this point!

It's very possible that Emma will require another heart surgery in the future, but for now everything is holding up ok and not deteriorating, which is a wonderful thing!!


Our third cardiac kiddo was Micah.  He really only barely squeaks by as a cardiac kid, but he still is seen by cardiology.  He was born with a thickened cushion in his heart.  This could be because of the 'irregularities' that kids with Ds often have, or his mother could have been a diabetic which would also cause that.  We have no idea, so we just watch it year to year.  He goes annually for monitoring but otherwise is doing great!


James was our fourth cardiac kid, and at that point we felt pretty confident in our cardiology team and were secure in taking him in without regard to the heart.  He has some minor sounds and had an ASD and a PDA (similar to a PFO but in a different area.  PDA means Patent (open) Ductus Arteriosis and is also supposed to close after birth) which both closed spontaneously (without surgery), and he has PH.  So he is seen every 6 months but otherwise is doing great :)!


Aleksa was, we thought, our last cardiac kiddo and we thought she may be clean and clear as well.  But... not so much.  She has what is likely a PDA but by 8 years old it should have closed by now.  She will go to cardiology in 6 months and we'll see if it's something that needs to be operated on.


Our last surprise was that our baby girl, Lynae, who otherwise has no outstanding heart issues, has what appears to be a PDA.  It's not uncommon for young kids to have this, and it generally closes by 3 years old.  To be sure it closes, she is now followed by cardiology and will also see the doctor in 6 months.  Hers may require closing if it doesn't close on its own as well.


  1. Wow - I did not know that today was National Congenital Heart Defect Awareness Day!! My youngest has aortic valve stenosis (two of the three flaps are fused together which causes backflow and eventually congestive heart failure) and will eventually require surgery for replacement of the valve. We also had a scare this past year of his aorta enlarging, which would have required surgery, but has seemed to level out. He is seen by his cardiologist every 6 months. Glad to see everyone seems to be doing well with all their issues! Continued prayer for all!!

  2. Wow! That's a lot o cardiac issues for one family! I actually had a PDA myself, but it closed on it's own, sometime before I was four. I remember my last check up when I was four :-)

  3. Thanks for sharing your story! Happy CHD Awareness Day to your lovely family! My son has a bicuspid aortic valve with regurgitation. During a routine visit they noticed his aorta was pinched as well (coarctation of the aorta). Last year we were thrilled the doctors decided to try a stent to open his aorta instead of open heart surgery. A short 6 months later he was playing football again. Only 10 years old and so determined his CHD's will not slow him down!