Make A Child Smile

Caroline's Story
written by mom Stephanie

Caroline was born on my birthday, November 11th, 2004 after an extremely easy pregnancy. Caroline was my second c-section and second breech baby, following in the footsteps of her big brother, Noah. When Caroline was relatively newborn, the nurse in the nursery didn't like her color, so she was on oxygen right from the start.

After a few hours with no improvement, Caroline was sent out of state (only about 10 minutes from where she was born) to a hospital with a NICU and specialized equipment. After a few hours, we got our phone call....Caroline had a serious heart defect and needed to be sent somewhere for surgery. I chose to send her to Penn State Milton S. Hershey Medical Center in Hershey, PA. Caroline was airlifted to Hershey around midnight. After they ran their tests, they concluded that Caroline had Hypoplastic Right Heart Syndrome, specifically, small right ventricle, no tricuspid valve and a narrow pulmonary artery. She had her first surgery, the BT shunt, on November 12th, 2004 at a mere 1 day old. She came through the surgery okay, and I got the phone call that she was stable.

I finally got to see her on Sunday, November 14th, and it sure is scary to see that ventilator for the first time. But, Caroline did well and they gave her some medicine to up her respirations after she was off the vent, and she began to have "shakes". At first they thought it was a reaction to the medicine, then decided it was seizures and gave her Phenobarbital, which made her tired. Caroline's biggest obstacle before coming home was learning to eat, which I kept arguing with the nurse, how is she going to eat if she has food going to her stomach all the time (g-tube), So, FINALLY they stopped her feedings with the tube (she only had them at night) and she ate much better. This is also around the time that I was told that Caroline was missing her corpus callosum in her brain, but that it shouldn't hinder any of her development (and all the while I'm being told, I'm thinking, "boy, I really screwed her up somehow").

Anyway, she finally came home on December 7th and it was nice. In January 2005, she had a visit with a neurologist who didn't think she was having seizures and that her corpus callosum was just small, not missing. So, we got her off the Phenobarbital and she was a new kid! She was awake more and started developing more. In May, she had a heart cath and they found abnormal tissue growing out of her small right ventricle (where it had been closed up). On August 5th, 2005, Caroline had her second stage surgery, the Hemi-Fontan (or Glenn) Procedure. She was out in 5½ days.

In October of that year, she started physical therapy, as she was not yet sitting on her own. By January she was getting into sitting and whenever I saw her in bed she'd be sitting up. By April, she was crawling, and now crawls like a mad woman. She is pulling to stand and cruises the furniture. She is getting DAFO leg braces to help her gain strength in her ankles. She is starting to talk, her biggest words being, "up" and "eyebrow." Healthwise, she is doing very well. She is small, at just under 22 pounds and 33 inches, but she IS growing. Her final surgery is not yet set, but that one is usually around age 3.

Caroline sees her Pediatric Cardiologist every 3 months, with an echocardiogram twice a year (every other visit). Caroline's 3rd stage surgery, called the Fontan, will connect her inferior vena cava to her heart to bring blood flow to the lower half of her body because her right ventricle was severely hypoplastic (small) and was closed off during her last surgery, the Glenn (or Hemi-Fontan, which connected the superior vena cava, and restored blood flow to the upper half of the body - basically, a type of bypassing because her right vent doesn't work).

She needs to grow for awhile before her next surgery. And, they will also watch her O2 Sats. As long as they are above 75, she won't be in immediate trouble (they were at 82 at her December 22nd appointment). Pre-surgery, Caroline will have a heart catheterization to check the actual function of her heart, so as not to have any surprises during surgery. She also had a cath before the last surgery, where a small piece of tissue was found. It turned out to be an aneurysm and it was removed during the surgery.

Caroline will be on aspirin for life, and with her surgeries, some medications here and there for blood pressure issues. After almost a year and a half post-Glenn, she was finally able to stop taking her Captopril. She also takes Zantac because heart babies often have reflux problems. My biggest worry is that, with the latest round of our heart babies not making it through the Fontan surgery, that I am going to lose her. I cherish every day that she wakes up because I know she's still here.