Our experience with a CHD.

With Congenital Heart Defect {CHD} Awareness week just around the corner, and a challenge to fill Pinterest with the amazing faces of those affected by a CHD, I decided to sit down and take a minute to document my experience with the CHD world. A world that just over 10 months ago I knew little (to nothing) about. I am a mom who decides that it would be a good idea to have our babies born at a hospital with a NICU "just in case"...but with little thought that we'd actually need to use it. According to the ultrasound we were anticipating the birth of a healthy baby around the beginning of April 2011. Darla Jane was born on the evening of March 30th. A cute, cute little thing who looked as healthy as can be. (But a pulse oximeter test was not done. Had it been, her defect might have been caught right away.)

We were excited to welcome our 4th child into our family. The other kids got to see her that night as well as the next day. The pediatrician made his rounds that morning and noticed a murmur in listening to her heart. The hospital's cardiologist just happened to be there when he was examining her and suggested that an echo be done that afternoon "just to be safe". He brought Darla Jane back into our room telling us she looks great, he did hear a little murmur but that it was probably nothing. They were just going to check later in the afternoon "just to be safe". So I got to keep our baby girl in our room most of the day until they took her down for the echo. No big deal....well, it was a big deal. My husband had gone down with her and when he came back without her, suggesting that my mother-in-law should take the kids on a walk, I knew there was something going on. The minute they walked out of the room he broke down, and so did I. All we were told was that the left side of her heart wasn't working that that she would need to be stabilized in the NICU and transported to the children's hospital. So less than 24 hours after giving birth I was requesting that I be released so that I could go with her. After getting to the children's hospital and having a complete echo done Darla Jane was diagnosed with Hypoplastic Left Heart Syndrome. And we where thrown into the whirlwind of CHDs. We were told there were two options, list her for a heart transplant or head down the road of a 3 stage open heart surgery route that would essentially "re-plumb" her heart so that the right side of her heart will serve as the left, and pump her blood out to her body.

Darla Jane still needs one more open heart surgery to complete the 3-stage process. She will still need periodic heart catherizations to enlarge the stent that was placed to hold open her narrowing aorta. There is talk that she will eventually need a heart transplant because the right side of the heart, which is the smaller side, is not made to do that much work for a life time.

But we try not to focus on that and just focus on today. Even if today means having Darla Jane hooked to an oxygen tank and monitoring her blood oxygen levels, or taking her to get a synigis shot so that she has less of a chance of being hospitalized for a cold, or giving her her twice a day medications. We are thankful for every day we have with her, and our other 3 children. Having a daughter with a congenital heart defect has made us more aware and sympathetic of the struggles that others go through. It has made us count our blessings and look toward the source of those blessings. Having a daughter with a congenital heart defect has been one of the hardest but also one of the most rewarding experiences in my life.