Nearly one in every 125 babies is born with a CHD. It is the #1 birth defect in America. This year alone, close to 40,000 babies will be born with a CHD.
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.
Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome --> Maddox's Defect
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects
(July 16, 2009. The first time I saw Maddox after he was taken to the NICU)
With these statistics and the fact that my own husband was born with a CHD (Coarctation of the Aorta) how did I not know? The thought that my baby could be born with half a heart never once crossed my mind. I'd never heard of it. And besides that, those things happen to other people's children. When Luke and I got married I was much more concerned about having children born with Cystic Fibrosis. I worried even when Luke tested negative as a carrier. CF is something I'm familiar with, it's something I've lived with and something that in a weird way I'm comfortable with. So even though I worried, I knew if it happened, I could handle it. I seriously have no logical explanation to why I never gave a thought to CHD's and the chances of having a child born with one. The only reason I can think of is that it was a tender mercy from the Lord. If I'd have known I would have worried my self sick. I would have wondered, and researched, and worried some more. It would have made me fearful of having children, and though I don't think it would have stopped me, I do think it wouldn't have been as sweet as an experience. Having Bailee born first and healthy is truly such a blessing. She gave me another reason not to worry. Maddox not being diagnosed at the 20 week ultrasound is another blessing I'm grateful for. As sick and miserable as I was during that time, I was grateful to be carrying another beautiful healthy baby. Reading back over our experiences with Maddox, especially those first days, remind me of a million other reasons to be grateful. Looking back I know without a shadow of a doubt that the Lord was with us. There is no way I could have gone through that time alone.I was re-reading some comments on one of the early blog posts about Maddox. Someone commented that before we knew it, all of this would be behind us. I remember thinking how that would never happen. This will never be 'behind' us. Maddox's heart will never, in this life, function properly or get better. That's just the reality of his CHD. However, at this point in our journey some of it is behind us. We won't re-live those 6 weeks again. We will have other trials, more time spent in the hospital, more unknowns. But it won't be the same.
I was getting Maddox dressed after a bath the other night and I touched his scar and realized that it had been awhile since I'd even noticed the scar. Like I thought that would ever happen. But we are at point where things are as 'normal' as they could be. Maddox is doing better than I'd ever hoped. He is the most mischievous little rascal, and he drives me nuts sometimes. You can't get a better description of normal than that, can you?? It's nice to be in this place right now. And I am enjoying it, I hope to the fullest. The blogs of other CHD warriors keep me connected to the reality of the situation, and I know that this won't last. But I also know that we'll be ok. Things will work out, and the Lord will be with us.
I feel like this has been a lot of rambling. So many feelings, thoughts, and emotions....so little organization. I read this poem this morning though and the words were so close to our reality that I wanted to share it.
What is a CHD???
You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day. This is...a CHD.
**Written by Stephanie Husted (fellow heart mom)
