Hi! I’m Holly Hancock. I’m a 45 year old wife, a dog mom, a daughter, a sister, an aunt, a niece, and a friend. I love to laugh, watch movies, travel, attend happy hour, lay by the pool, hang out with family and friends, go to concerts and sporting events and live life to the fullest. I was born with Hypoplastic Left Heart Syndrome (HLHS). In the last few years I’ve been asked to tell my story so after much prayer, thought, and encouragement I’ve decided to share it through this blog. A few things you should know upfront if you’re considering joining me on this journey:
#1.) I am not accustomed to talking about my CHD for 3 main reasons. Growing up it was generally only discussed when I was experiencing symptoms, had a doctor appointment, was having surgery or experienced social issues. My 2 younger sisters are perfectly healthy so for the most part I was treated like I was too. More on that later. Secondly, some of my experiences have been scary and heartbreaking and I really don’t want to relive them. However, I am willing to dive deep and share them because although they are difficult to talk about, they are still a part of what I’ve experienced living with HLHS. Lastly, my family and I never knew another CHDer until 8 years ago so I spent most of my life just wanting to fit in and be like everybody else. I didn't really have a reason to talk about it and based on my experiences, I'd try my best not to call attention to it.
#2.) I am not my diagnosis. I don’t know if it’s due to how I was raised, my experiences living with HLHS, not knowing anyone else with a CHD until recently, my faith, or a FIGHT over flight mentality that has shaped this attitude but it’s how I feel. That said, here are a few of the highlights of my complex diagnosis as described by my Medic Alert card:
Atrial Septal Defect, Congenital Absence Right Superior Vena Cava, Congenital Heart Defect, Endocardial Cushion Defect, Heterotaxy Syndrome, Hypoxemia, Polysplenia, Pulmonary Artresia, Right Aortic Arch…
#3.) I tend to cuss more than I should. I realize that teens may be reading this so I’ll try to keep it to a minimum but don’t be surprised if you see some colorful language every now and then.
If you’ve made it this far, I want to say thank you and it’s reassuring I haven’t completely scared you off. Some of the topics I plan to cover in no particular order are doctor appointments, family, college, dating, marriage, children, bullying, grade school, hospital stays, career, and treatments. Rather than attempt to explain my experiences in chronological order, each blog will highlight a topic and I'll share memorable experiences from my life as they pertain to that topic.
In preparation for my first post, I asked my parents more detailed questions about my birth than I ever had before. In response, my mom sent me the following:
Memories of Holly’s Birth as Seen Through Her Mother’s Eyes
February 17, 1978 was one of the best days of our lives! Having gone through a couple of failed inducements and being sent home as “our first born was not ready to make his/her appearance!” Not knowing when we had actually conceived, we were first given a due date of January 4th. I worked up until the early part of December as my pregnancy was uneventful – I remained active and had no complaints…I enjoyed every minute of it. A third inducement was planned and because my body was not making progress to deliver after my water was broke, the doctor decided to do a C-Section. My husband was the first dad to be allowed in the OR during this procedure by my doctor…what a privilege!!!
We were so happy to welcome our beautiful little girl into the world at 8:44pm on February 17, 1978. Holly weighed 8 lbs. 8 oz. She looked perfectly normal but we did notice a slightly cupped over ear which the doctor felt was due to her large size and possibly her position in the womb.
Around 1:00 a.m. the following day, the doctor who was on duty was called in to examine Holly as she had developed some breathing difficulty. Her condition worsened and my husband Larry was called. She was going to be transported to Texas Children’s Hospital for further evaluation and examination. The doctor came in to tell me what the situation was around 5:00 a.m. When Larry entered my room and I saw his face, I knew something was very seriously wrong. He was crying and we called our minister to meet at Texas Children’s Hospital so that he could baptize Holly. The doctors were not giving us much hope (5% survival). Our minister shared with me that her condition looked very grim; however, when he pronounced the Lord’s blessing over her, it was like she had awakened with a bright new world and there was hope! The angel of the Lord came over her…the minister said it was one of the most beautiful moments. Larry had to sign several documents authorizing the doctors to examine and run tests on Holly. As I remained at Memorial City Hospital, Larry would call me periodically with updates and my doctor was excellent in keeping me informed of her condition. Our minister came to visit me and comforted me with prayers. Everything seemed so untrue…just couldn’t believe our baby girl had such a serious problem as she looked so very healthy at birth.
Within hours of Holly’s birth, the cardiologists performed several tests, including a heart catherization which confirmed that Holly was born with two chambers instead of the normal four. It also showed she was missing the main stem of the pulmonary artery along with other abnormalities. The testing confirmed that blood was not flowing into the lungs except through some small veins. Holly had a very low oxygen content and the Waterston Shunt Surgery was then performed on February 18th. The shunt surgery was done to allow a greater volume of blood to flow to the lungs. There was a possibility that the shunt would grow as she grew and demanded a larger blood supply. There was also the possibility that the shunt would not grow and at some point in time, she would have to have a similar surgery to increase the size of the shunt. The shunt itself was a very precise type of surgery as the shunt could not be made too large or it would flood the lungs with blood and if it were made too small, the shunt would clot, stopping the flow of blood.
Holly was in Intensive Care for 3 ½ days followed by 2 days in Intermediate Care and 5 days in a private room where I was able to join her and be her mom 24/7! We were blessed in so many ways: First, had Holly been born vaginally, most likely she would not have survived as the stress going through the birth canal would have been too much for her. Second, the vein (ductus arteriosus) that supplied blood during pregnancy did not close off immediately which gave the physicians time to run tests. Third, the fact that Holly was as large as she was, helped her get through the trauma her body was going through. Fourth, we had the benefit of excellent medical facilities and very skilled doctors.
Once we got home, we placed Holly in her crib and within 5 minutes, we were rocking and talking to her…we finally got our little girl home!!! We weren’t given a long-term prognosis other than take one day at a time. We would go for checkups every two months which progressed to three month intervals. On one occasion, I went to get Holly from her nap and while changing her diaper, my heart sank as her diaper was bloody and we headed to the doctor’s office. This turned out to be an intestinal issue. Once again, we were so blessed to have excellent qualified physicians who were genuinely concerned whenever an issue arose. Another heart catherization was performed two years later and we were told that no additional medical help could be offered at the time but six month checkups would be necessary.
As a parent, you want the best for your child. Because of her birth issues, we were not planning to leave the Texas area as we were very pleased with the medical care; however, God does work in mysterious ways and has plans for each us. In 1979, we were transferred to Midland, MI and were seen every six months at Mott’s Children’s Hospital in Ann Arbor in addition to the local checkups. About five years later, we transferred to the Philadelphia area and we were referred to another cardiologist. It was at Children’s Hospital of Philadelphia where we met Dr. Norwood who performed two open heart surgeries for Holly. The first open heart surgery was called the Fontan Procedure that allowed the blood to gravity flow through the lungs and back to the heart in a single pass. The surgery did appear to be successful; however, it was determined about a year later that a small vein was causing blood leakage and Dr. Norwood had to perform a second open heart procedure to resolve the issue.
Holly has been restricted to some physical activity growing up but reached milestones as a normal child. Going for medical checkups was never easy – it was always an emotional day but once again, looking back, we are so blessed. I know it was difficult for Holly not to participate in cheerleading and school sports, but we worked through those times. Holly was a typical teenager who felt life was not fair; however, we tried to help her find other options that would give her satisfaction and a sense of pride. Larry and I never treated her differently from our other children – she had chores and responsibilities as did her siblings.
Overall, the doctors have always been amazed at how well Holly has done with such a severe health issue and she continues to thrive and maintain a healthy lifestyle. She is truly our miracle baby!