Keeping an Open Heart

Monday left a bad taste in my mouth.

We woke very early to get to the hospital in time for Baby Girl’s fetal echocardiogram. Turns out, we were too early and did a lot of waiting. I felt like a nervous wreck. All of the positive vibes I’d been accruing were swept away as I sat in that waiting room. My mind kept returning to my earliest thoughts: Why was this happening to us? What if I can’t handle the results? Once we were finally escorted back to the scanning room, I did my best to put on a brave face. I watched the tech find my baby’s heart and start taking pictures from all angles. She took almost 100 images. The procedure wasn’t nearly as long as I was expecting. Even between Baby Girl’s many powerful jabs, the tech was able to get the images she needed within 20 minutes.

“Just a few minutes and you’ll be meeting with the doctor,” we were told. A few minutes slowly turned into twenty. Jacob and I tried to pass the time with small talk, though I had a horrible sense of uncertainty. I could see a hint of it on his face, too. We were eventually brought into a separate room and were sat at a large table. The atmosphere gave me the worst feeling. I could tell something was wrong and that we weren’t going to get the news we’d been hoping for. Sure enough, after the cardiologist joined us, she explained that Baby Girl has a hole in her heart.

This defect is extremely common with Down syndrome. As a matter of fact, it is the most common heart defect. The good news is that it is subtle. She actually had to strain to see it in the images (hence, the long wait time). Nevertheless, it is there. For now, they are calling it a Partial Atrioventricular Septal Defect (AVSD). Basically what that means is that the four chambers of her heart did not develop and grow completely together.

The doctor explained to us how the heart works and what is different with our girl. Normally,  oxygen-poor blood from the body is brought into the heart, pumped through the lungs to be oxygenated, brought back into the heart, and then is pumped back out to be circulated through the body. With this defect, the oxygenated blood can flow backwards through a hole and go back through the lungs instead of being sent out to the body. This means that the lungs are getting a lot more blood than normal and the heart is working that much harder to pump it.

What this means for our girl is that she might have trouble breathing. She also may have trouble gaining weight. This defect will cause her little body to work a lot harder and that means she might have less energy to eat. We will need to keep a close eye on these symptoms for the first part of her life.

Again, the good news is that the defect was subtle. She may not show these symptoms, or they might be very mild. The news that was difficult to swallow is the fact that in order to correct this defect, we are looking at open heart surgery.

Open Heart Surgery. Hearing the words felt like someone had simultaneously stolen my lungs and punched me in the stomach. I have never felt such a strong urge to put myself in someone else’s place. I would do absolutely anything to take this responsibility from her. Anything.This must be what its like to be a mother and its breaking my heart.

The surgery will be performed whenever it is needed. They will go in and insert patches to complete the missing parts. When she’s born, her heart will be the size of a grape. By the time she’s 6 months old, it will have doubled in size. By this time, if she is gaining weight and is doing fine, the surgery could be pushed out to 9 months, 12 months, and so on… With any luck, we can make it to 18 or 24 months before having to pass her off to the surgeons. The bigger and stronger she is, the easier it will be for the doctors to repair her heart and for her to recover. This is where the subtlety of her defect plays a part.  Hopefully, it will be much easier for her to nurse, breathe, and grow.

Sometimes life is unfair. My little girl did nothing to deserve this.  The hardest part is knowing that there is nothing I can do to help her right now. Next month, we follow up with the fetal cardiologist, a genetic counselor, and a neonatologist (specializing in newborns). My pregnancy should still run smoothly. She should be able to withstand a normal delivery at our normal hospital and will be able to come home with us as soon as she’s ready. We will then have some long, stressful months ahead of us. There will be frequent checkups until the doctors decide that she’s ready for the surgery and that’s when all I can do is trust in the doctors, nurses, surgeons, and staff at Children’s Mercy Hospital.

Monday was just a bad day all around. During tough times, its difficult to understand why things happen. I always try my hardest to see the silver lining in a bad situation. In Baby’s Girl’s case, things could be so much worse. Sometimes there are incidences where seeing the silver lining seems impossible. Or more often than not, the silver lining offers no comfort and can be more upsetting than helpful. When there’s nothing else, I remember to be grateful for what I am given. I hold my loved ones a little tighter and breathe deep.  Tomorrow is a new day.


* I know that this heart business can be very confusing. Our fetal cardiologist gave us loads of information to use and pass on to the family & friends who might be concerned:

Animation of the heart: http://www.cincinnatichildrens.org/patients/child/encyclopedia/defects/avsd/

Congenital Heart Defects & Slideshow:             http://kidshealth.org/en/parents/congenital-heart-defects.html

Treatments (she will be needing surgery):               http://www.nhlbi.nih.gov/health/health-topics/topics/holes/treatment

Image of Surgical Procedure (patches): http://www.vanderbilthealth.com/includes/healthtopics/getimage.php?imageid=104531

 

 

13 thoughts on “Keeping an Open Heart

  1. Thank You, for keeping us informed on her prognosis and what they plan on doing when she is born. Hope,hope the surgery will be putt off for as long as possible.. God Bless

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  2. Reading your story is so comforting to me, even in unfortunate situations as these. Beckett has a full AVSD and sometimes it is just nice to hear that others are having the same feelings about it. I will keep your little one in my thoughts as well.

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  3. It is stories like this that make me thankful that our diagnosis was a birth diagnosis. I know your hear must have been so full of concern for your growing little one during your pregnancy, I am so glad she is here safe and well. Thank you for sharing on the T21 bloghop!

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