Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Tuesday, February 14, 2012

1 in 100 isn't so rare.

We're one of them.  This week, February 7-14th, is National CHD Awareness week.  CHD stands for Congenital Heart Defect, and it affects 1 out of every 100 children. 

This is a snippet of Joel's story.  Many of you are very familiar with it.  Some are not.

When I was pregnant with Joel, we went in for our routine I think 21 weeks...I was so excited to find out the sex, and to double check all of his organs.  Adam and I had miscarried a baby before, and my anxiety level was high as we waited.  We were hoping for another girl to even the score, but when we found out he was a healthy 'him and not a her,' it didn't make a difference.  Healthy was good.  The ultrasound tech even said, "Nice strong heart" during the appointment.

When Joel was born, I was pretty medicated.  It was my third cesarean, and I (unknowingly) was allergic to morphine.  As we planned, we brought a favorite CD, Coltrane for Lovers...which you should purchase if you don't have it.... Dr. Mvundura delivered our precious little baby in just a few songs' time, Adam was light-headed from being in the room, and my mom got the opportunity to cut the umbilical cord!  I got a few peeks at him and was wheeled off to recovery.

More than an hour passed, and I still hadn't gotten to hold Joel.  I 'wiggled my toes'.  No change.  "He swallowed some fluids." "Just waiting for his sats to come up"....More hours, and no Joel.  Things weren't feeling right, and nurses were starting to dodge my questions.  By this time, it had been five hours....and the pediatrician came in to discuss with us.  Joel's oxygen saturations were supposed to be at 100%.  They were at 72% with supplemental oxygen.  This was no ambiotic fluid issue.  Tacoma General was called, and a transport team came to take our baby away.  We prayed over our baby and sent him with strangers, hopeful that they would find what was wrong with our baby.

After a quick chest echo it was obvious.  Joel had heart defects.  Four of them.  The first, the big one, transposition of the great vessels.  His aorta and pulmonary artery were switched.  His heart was getting oxygen.  His body was not.  The second and third: Arterial Septal Defect and Ventricular Septal Defect (a hole between chambers,) and the fourth: PDA.  Patent Ductus Arteriosus is that little vessel that closes when a child is born, once they need to breathe through their mouths.  Joel's stayed open, thankfully, which allowed his body to get 72% sats....we know another little transposition kid who's pda didn't stay open.  He was born with 30% sats.  (Luckily,) his parents had found out about his defect during the pregnancy, and cardiology was standing by.

Joel's heart surgery was performed when he was 5 days old; a surgery called the "Arterial Switch."  This surgery was 7 hours long.  Typical hospital stays for this sort of defect is 5-7 days in the hospital.  It was an open heart surgery.  The Arterial Switch surgery has a 95% success rate.

We were thankful that Joel was born into a hospital that performed routine oxygen saturation checks.  He wasn't born blue, he looked like any other baby.  There are many heart defects that can be missed during routine ultrasounds, but found during oxygen sat. tests.  If you are pregnant, or know someone who is, get or suggest getting a oxygen saturation test done while the baby is still in the hospital/birthing facility.  It can save lives!

In honor of Congenital Heart Defect Awareness Week, we would love to say thank you to everyone who works day-in and day-out to keep hearts healthy.  It's a tough job working in healthcare, and even tougher working with the young & sick.  We had such an amazing experience with the people of Tacoma General/Mary Bridge Children's Hospital.  Nurses, doctors, surgeons, intensivists, lab techs, ultrasound/radiology techs, pharmacy, social workers... the list is long, and the benefit to my family is great.  Thank you for all that you do!  We love you!

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