Friday, May 6, 2011

How To Mend A Broken Heart

Today is the beginning of a tough few weeks, maybe even a tough couple of months.  At 5:30 am we'll be hitting the road and taking Joey back up to Ann Arbor, Michigan to the University of Michigan C.S. Mott Children's Hospital.  We found out this week that this time they will be sedating Joey so they can do a sedated echocardiogram and get a really good picture of his heart.  

I can't even believe that we are just about four weeks away from his actual surgery date of Wednesday, June 8th.  We have literally known since I was 28 weeks pregnant with Joey that he would likely need open heart surgery.  When he was only one month old, his cardiologist confirmed it.

A sign of spring in our backyard. 
Since he was born we were told that he probably would not ever go into heart failure on his own, but that we needed to know what the signs were to look for just in case he did.  Blueness around the lips.  Lack of color in his skin.  Excessive perspiration.  If you ever worry about leaving your kids with your babysitters try to calmly explain the signs of heart failure and then assure them that it probably won't happen.  Yikes!  We're lucky that all of our sitters have not been intimidated by these instructions.

Joey has an Atrial Septal Defect (ASD), which is sometimes referred to as a hole in the heart.  It is a type of congenital heart defect in which there is an abnormal opening in the dividing wall between the upper filling chambers of the heart (the atria).  Somewhere between 50-60% of kids who have Down syndrome also have some kind of congenital heart defect.  Kids with an ASD have an opening in the wall (septum) between the atria.  As a result, some of the oxygenated blood from the left atrium flows through the hole in the septum into the right atrium, where it mixes with oxygen-poor blood and increases the total amount of blood that flows toward the lungs. 

Joey also has a small VSD and a mitral valve leak, which they have told us they will also fix when they repair his ASD.  In kids with very small ASDs, the defect may close on its own.  Larger ASDs, like Joey's, usually won't close, and must be treated.

The doctors have explained (three of them because I needed to hear from three separate cardiologists that he really needed to have open heart surgery) that due to the size and location of Joey's ASD, he needs to have open heart surgery to repair it and the other issues.  If he doesn't have the surgery, then his heart and lungs may become permanently compromised and damaged.

When surgical repair is necessary, the baby undergoes open-heart surgery.  In this procedure, a surgeon makes a cut in the chest and a heart-lung machine is used to do the work of the circulation while the heart surgeon closes the hole.  The ASD may be closed directly with stitches or by sewing a patch of surgical material over the defect.  Eventually, the tissue of the heart heals over the patch or stitches, and by six months after the surgery, the hole will be completely covered with tissue.

Our prayers right now are that Joey stays healthy up until the surgery, that his surgery goes extremely well without any complications and that he recovers quickly and without any infections. Starting on Monday we are going to go back to being extremely cautious about having him near anyone who is ill.

My preparation for June 8th is endlessly reading other blogs about other babies who have had open heart surgery and looking at all the photos.  It helps desensitize me to what Joey will look like going into the surgery and then coming out.  I know it's completely different when it is your own baby, but it's all I know to do for now.

I'm also going to work on a photo book for Tommy.  I'm going to take lots of pictures up at U of M to show Thomas Henry where we will be with his brother while he stays home with LoLo.  It's going to be a tough one to leave him home, but as of now we think it is what will be the least traumatic course for Tommy.

Speaking of LoLo-- as I organized my folders of questions, my bottles for Joey and all of our stuff for this trip to U of M, I pulled out my beautiful Issie Heart Necklace that our nanny, Lauren (LoLo to the boys) got me.  It's one of my badges of strength that I wear to remind me of the many babies and mamas who have traveled down this tough road before them.  It's a gorgeous necklace by Kendra Scott.

The story behind the necklace is that Isabelle "Issie" can best express herself through picture drawings and while undergoing a series of heart examinations, she started to draw hearts to let her family know that her heart was going to be fine.  She worked with Kendra Scott to design the Issie Heart Necklace and now a portion of the proceeds from each necklace is donated to the National Down Syndrome Congress.  I wear mine and it gives me strength.  Thank you, LoLo and thank you for taking good care of Tommy when we have to leave him on days like today.


  1. Love you beautiful friend. Your words give me the gift of feeling like I'm there with you on this journey. Hugs to your precious boys. Always, Shari

  2. Please know that I will be thinking of you guys are you head down this journey. You idea of the photo book for Tommy is great. is an excellent blog about a father's love for his daughter who has Ds. Grace has had one part of her surgery already and right now they are on a similar road for part 2 OHS. He has photos on there for his Gracie.

    Btw, your description of Joey's ASD and the procedure are really good.

    Please keep us posted.

  3. We went through a complete AV canal repair in November. It was awful leading up to it but it has be awesome since. All I can say is if you have any questions please ask and that I will be saying prayers.

  4. Prayers! Thank you for sharing your experience - Ellie has her OHS in a few months (TBA).


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