Her Broken Heart.

My baby was born with a broken heart.
No, not like in the movies, where someone breaks her heart.  As in, Georgia was born with three congenital heart defects that were not found in utero.  They are extremely common among children with Trisomy 18, and sadly, the cause of most deaths.  Statistics used to quote that 90 percent of children with Trisomy 18 would not live past age one, but didn’t mention the fact that a large amount of these angel babies were denied life-saving care, such as heart surgery to correct defects.  These life-saving interventions would be offered to any typical child, but unfortunately, babies like mine have been labeled “incompatible with life” by decades of medical professionals, and the lack of life-saving care just perpetuates the statistics that these children cannot survive.  Luckily for us, we have a medical team that believes in Georgia’s ability to survive, and if surgery were needed, would happily offer it.
But Georgia’s three defects have never caused issues for her well-being.  We’ve gotten very lucky that her heart has remained balanced, and these broken parts have slowly healed themselves with age.  As of last December, the defects had become so restrictive that we had been cleared for an entire year.
Of course, as a mother of a medically complex child, you worry that maybe they missed something, but I’ve always put my faith in God protecting Georgia, since He hasn’t let us down yet.
Very early Friday morning, my husband and I, on absolutely no sleep, brought our daughter into the emergency room at Children’s.  She was having difficulty keeping her oxygen levels up and had a very high heart rate.  They took chest x-rays, and although everything was clear, she did show signs of a slightly enlarged heart, which, for a child with three heart defects, could be a problem.
I try, I really try, to give it to God.  I try not to worry.  I try not to be scared or nervous, because I know she needs me to be strong, but this morning, I can’t keep the ball in my stomach from making me feel sick.  I know it may be nothing, just the angle of the x-ray or just a bad x-ray, but God, I’m scared.
In a few hours we will meet with our cardiology team to take a better look at her heart, and I just, I’m upset.  I’m upset we are going back.  I’m upset my husband can’t be there because he has to work and it’s last minute.  I’m upset that all of this is making me doubt our team and I’m upset that I am so damn scared.  I just want to believe that this is nothing and God has got this.  And I know, even if it’s bad news, God has this, but I’m so tired of bad news.
My dad has terminal cancer.  My parents are getting divorced.  My daughter has a life-limiting genetic disorder.  We lost my mother-in-law to breast cancer.  I was fired from my job.  We have sacrificed and cried so much in the last few years…  I think we deserve a break.
So I’m going to watch my daughter play.  I’m going to memorize her smile because I’m so scared it may not always be there.  I’m going to wash my face and drink my coffee and keep moving forward until this appointment is over and I can breathe again.  And most of all, I’m going to pray, because He hasn’t let me down yet.airbrush_20180814212104Update: Georgia’s cardiologist appointment went even better than expected!  Not only is her heart fine, but one of her three defects has resolved itself!  So now she only has two! Thank you to anyone and everyone who prayed for her.

2 Comments

  • Brea Hodge

    Good Lord I have tears running down my cheeks. It took me right back to when I had to hand my tiny 7 month old to the heart surgeon. But you put these experiences into words like I never could. I remember that scared feeling it was so intense I cancelled Corey’s surgery twice I was only 17 I wanted to run & hide with him. He was a trooper tho home in 4 short days. You’re such a good mama Kimberly. Medical mama had me in tears too I remember the sound of IV & sat machine’s being around 24/7. You are so strong tho I was young and had help you do a lot of your own. I got so much love & respect for you!

  • Bekah

    Love reading about your journey and am in awe of your strength and advocation of your daughter and family! Curious if you have any experience with any Child Life Specialists while being in the hospital so much. Would love to hear about it!

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