Thursday, August 23, 2012

Congenital Heart Defects

A friend messaged me on Facebook recently with a simple yet desperate message.

"My baby needs to have open heart surgery. We meet with the surgeon on Monday."

Those two sentences seem so simple, yet to a mother whose child is facing the necessary evil of fixing his or her heart, those sentences are loaded with meaning. The anticipation of the surgery date. The fear the surgeon will have gotten up on the wrong side of the bed that day. The wrenching and awful grief of potentially loosing a child. The upheaval in family life as mom and dad spends most of their time at the hospital, worrying about the child in the bed in front of them AND the children in their beds at home. The concern of giving correct medications, proper bandage placement, and combating the occasional bad nurse all creep in, adding to the stress.

Having lived through this nightmare (and coming through it with flying colors) I feel it's my duty to try and ease other parent's fears and concerns. One of the very special gifts given to us by an online stranger that helped to prepare me and my husband was access to their child's heart surgery pictures. Yes, they were graphic. Yes, they were personal.

But you just can't imagine how they helped to prepare us for the way our daughter was going to look.

Sometimes we assume that after a surgery, our children will look much the same as when we nestled them into the surgical nurse's arms and they were whisked away through the labyrinth of hanging privacy curtains and warren-like rooms. The same beautiful face and body, except now with a functional heart.

Don't assume.

I'm sharing my child's surgery pictures in hopes that we can help other families going through this. Children with Down syndrome have a 40% chance of having some type of congenital heart defect, but thanks to today's advanced technology and surgical techniques, surgeons can repair almost anything. Statistics are on your side! Heart surgery has very high success rates; 98-99% depending on where you look. Those are great odds.

Posted below are Madison's surgery pictures. WARNING: EXTREMELY GRAPHIC!

This is Madison at 3 months of age, still at 7 pounds. Four days before surgery.
This is right after surgery. It's really freaky to see your 3 month old with a respirator breathing for her. Very mechanical and scary.
Early the next morning...still all kinds of tubes, drains, and wires. At least no respirator. It's a life-saving machine, but I was glad to see it go.
The sheer volume of equipment used in the NICU still boggles my mind. And my baby was hooked up to each and every one of those machines. 

Day 2 in the evening. She's looking better but still hooked up to most everything.
Hello, Baby! First time opening her eyes with a good-as-new heart, and I was there to see it!
This is my FAVORITE hospital picture of Madison. It's been 3 days now, and the nurses are remarking to me how fast she's recovering.
Day 4. Some of the drains and other tubes have been removed.
Day 5. Hooray! They disconnected the pacemaker. The wires are still left in-just in case it needs to be re-connected. She's looking GREAT!
Day 6. We got moved to a "regular" room. She looks so TINY in that bed!
Little bean in her giant bed.
The end of Day 6. All packed up and GOING HOME!!!!!!!

In three months, she doubled her weight. By the sixth month, her scar faded. She has been going strong ever since, and we are eternally grateful to the doctors, nurses, and surgeons who all performed to the best of their ability to save Madison's life. I wish every parent whose child is going through open heart surgery the best of luck. In some small way, I hope this post will help you. Hugs and prayers to you.


SocialBee said...

Reading your story brought tears to my eyes. Our son, Myles, has been through 3 heart surgeries. He just turned one on July 21st. He is doing amazingly well, but you are so right - simple words that aren't fair and don't describe what you are in for. There is nothing to prep us fully but I agree, I wish someone would have prepped us a little better. Of course, by the 3rd surgery, we knew what we were up against but that is not something I want to become a seasoned pro at, that is for sure! Thank you for sharing your personal story. Hugs to you and your beautiful little girl!

Kelli said...

You are so wonderful and generous to share your story. You are just as beautiful on the inside and out as you have always been and that is reflected in your beautiful children. Love

Nikki~Down syndrome Storyteller said...

Thanks Bee, and best wishes to Myles. What a trooper-we only had to go through one. Hang in there, little guy! Kelli, thank you. You have always been a great example to me and so your words mean a lot! Thanks for the nice comments!