What is a CHD? CHD stands for congenital heart defect. A congenital heart defect is a defect in the structure of the heart and great vessels which is present at birth. Many types of heart defects exist, most of which either obstruct blood flow in the heart or vessels near it, or cause blood to flow through the heart in an abnormal pattern. Some defects don't need treatment, but complex congenital heart defects require medication and/or surgery.
One day later on June 15 we received an unsuspected call from our doctor indicating that the ultrasound pictures of our baby’s heart showed there might be a problem. Even though we didn’t ask those questions, we were blessed with a technician that just thought the heart did not look right. Our doctor got us in for a level 3 ultrasound and a Fetal Echocardiogram on June 20 (yes, 5 agonizing days later). This is a day that changed our life forever. The doctors confirmed that our baby had Hypoplastic Left Heart Syndrome (HLHS) and words cannot explain the emotions that overtook us trying to understand why. This is an abnormality in which the left side of the heart (left ventricle, aortic valve, and aorta) is severely underdeveloped. When the left side of the heart is underdeveloped, the right side of the heart must pump blood to both the lungs and the rest of the body. The exact cause of HLHS and any CHD is unknown but there is a genetic link even though it can happen to anyone.
The doctors gave us some hope and told us about a 3 staged surgery that would mend our son but not cure him. From this day we moved on to a whole new outlook on life of taking each day as it comes and we had to wrap our minds around our future.
Moving from trying to figure out why us and what causes HLHS, we spent the rest of the summer at numerous doctors’ appointments and trying to learn as much as we could about our baby’s condition and the journey we had ahead of us. My actual pregnancy continued on pretty uneventful. On the night of October 28 we made our way to Abbott Hospital, over an hour from our house, to wait for our baby’s arrival so our son would be near the best team of doctors we found for him as soon as he was born. Samuel Joseph Holicky was born at 40 weeks exactly on October 29 at 4:29pm weighing in at 8 pounds 15 ounces and was 21 ¾ inches long. The doctors were impressed at how big he had grown and hoped then that this would continue to be true; Sam continues to show them that he isn’t going to let his underdeveloped heart stop him.
On Wednesday, November 14 we were released to go home, just in time for the Holidays! During this time Sam was medically fragile until his second surgery as his heart was working very hard due to lower oxygenation saturations. This meant keeping up with a medicine routine, checking his weight daily, checking oxygen saturation levels throughout the day, home nurse visits, monthly cardiologist checkups, monthly shots to help prevent RSV (a respiratory virus that would be severe for any infant and especially for Sam with his heart defect), lots of sanitation efforts, and keeping the colds and flu out of our house. This also meant staying home as much as possible, so my husband was able to stay home with Sam for most of this 3 ½ months, especially after my maternity leave ended. I would work from home 1 or 2 days a week and our moms would help when needed too. All of these efforts were fairly successful and we never landed back in the hospital.
Sam’s oxygen saturation levels began to decrease over time, as they suspected, and they decided that Sam was ready for his second surgery. Sam was scheduled for surgery on March 8, 2013. In this procedure, the Glenn, more rerouting was done to reduce the amount of oxygen-rich blood circulating throughout the body. This surgery gave Sam an improved quality of life as the heart does not have to work as hard. Sam’s surgery took about 4 hours and again when I walked back in his room after surgery my heart just dropped looking at my little boy all sedated and hooked up to IVs, tubes, and the ventilator. Sam was eating again from the bottle the day after surgery and within 3 days he was off all IVs. Weaning him from the low flow oxygen was another story as the doctors felt his oxygen saturations were too low following surgery, but the actual cause ended up being RSV, keeping us in the hospital for 2 weeks. Finally on March 21, he was off oxygen and the cold was clearing so we got the green light to go home.
Sam was sent home on a home nebulizer treatment in addition to the heart medicines until his respiratory infection was completely cleared. On April 8, Sam made his first appearance at daycare and besides well-baby checkups, a daily medicine routine, and follow-up Echocardiograms, EKGs, and X-Rays with the Cardiologist, Sam is just enjoying life as a 15 month old and busy getting into everything. The crawling stage is quickly changing to walking, but it’s amazing to see the progress Sam has made in the last year jumping hurdle after hurdle. Sam is such a great addition to our family and brings joy, love, and laughter to us every day.
With the awareness we spread, we hope it helps to raise money for research and medical developments that will further Sam’s future. With these repairs that have been done and will be done to Sam’s heart, this does not cure him. There are many complications that come with Sam’s heart and no way to know now if he will need additional surgeries, a pacemaker, or even a heart transplant. Sam has a life full of medication and Cardiology appointments ahead of him along with worries every time he gets sick.
You can follow Sam at http://www.caringbridge.org/visit/samuelholicky