We often share stories from patients and parents of children with CHD, but there’s more to the CHD community. This Heart Month, we’re sharing stories from the voices less often heard, but no less important. In this guest blog, Vickie, the grandma of a child with CHD, shares her perspective on the impact CHD has on families and the unique view of life that comes with a CHD diagnosis.
It was Christmas morning in 2016, when our daughter, Becca, and her husband Alex, announced they were expecting their first child. To say we were thrilled was an understatement. We all hugged and cried happy tears! We would be adding another grandchild to our family. The baby would be our fourth, and we couldn’t wait to meet the baby in the months to come. While our daughter seemed to have severe morning sickness with her pregnancy, everything seemed to be going well.
As with most pregnancies, it was time for the 20-week ultrasound to check on the baby’s progress, anatomy, and gender. We waited eagerly to hear the results of their ultrasound. The hours passed and we still hadn’t heard a thing from the kids. Finally, we received the call. Time stood still, as our daughter and her husband explained that the baby had a heart defect. Becca and Alex sounded as though they were in shock. They told us they would talk to us later, as they needed some privacy to process the news.
Our daughter was a Pediatric Intensive Care and Pediatric Cardiac Intensive Care nurse and she knew a lot about children with heart defects. She worked with patients and their parents as they navigated the new reality they faced with a child diagnosed with a congenital heart defect and the healing processes following open-heart surgeries. It felt cruel that this should happen to our children. Our entire family felt devastated for Becca and Alex, and we waited anxiously to hear what the pediatric cardiologist and surgeons at Children’s Hospital Colorado had to say about the ultrasound, and about the baby’s future.
The baby, a boy, had what doctors called, “hypoplastic left heart syndrome.” Doctors explained that the baby would need three surgeries in his first three years of life. The first surgery would be done within a few days of his birth, the second when he was around 4-6 months old, and then at age three. We all felt the weight of the situation and felt completely helpless. We experienced a myriad of emotions as doctors explained the baby could live a good life, with medical interventions, but the future would be unpredictable.
As a mother, and a grandmother, sorrow was mixed with worry for my daughter and her husband, and the little baby. I was fearful and hopeful all at the same time. I had moments of despair thinking about the baby’s future surgeries, and then moments of excitement for this little one.
We all tried to resume a “normal” life and moved forward one day at a time. I stayed active at work; while Becca and Alex continued to meet with specialists to begin educating themselves and our family about what lay ahead. Though Becca showed us detailed diagrams of Ollie’s heart, I still struggled to understand his condition and the surgeries to come. Regardless of the future, we knew we loved this baby unconditionally!
The rest of the pregnancy progressed, with numerous appointments for a high-risk pregnancy. The baby grew and soon it would be time for our daughter and her husband to deliver our fourth grandchild into the world. We had a delightful baby shower and helped paint the baby’s nursery, and I created some artwork for it. It was such a thrill, yet I was apprehensive about the baby’s future.
On July 24, Becca was admitted to the maternal-fetal medicine unit and labor was induced. After hours of labor, and little progress, the baby was beginning to show stress. My husband and I were still on the highway headed to the hospital. My cell phone rang. Alex informed us Becca was going into surgery for C-section. Within a few minutes of arriving at the hospital, Becca and Alex welcomed their little boy, Oliver, into the world. We were thrilled to meet this little one. He was beautiful and looked perfect. Once we all greeted Ollie, he was taken to the CICU where he would be cared for. Though we said nothing, we all knew what lay ahead for this tiny little boy. I felt such fear about his upcoming surgery.
Two days after Ollie’s birth, our family gathered with Becca and Alex while Ollie had his first open-heart surgery. We all wept when nurses came to take Ollie from Becca’s arms to the operating room. The surgery lasted for hours. A nurse came out to the waiting room to update us on his progress. “Baby’s heart has been stopped and he is on the bypass machine (heart and lung machine), surgery is wrapping up, they will be taking him off the heart and lung machine, etc.” Each time the nurse came out my heart pounded. I was terrified something might happen to the baby during surgery. The baby’s heart was tiny as a walnut. We all knew the risks.
When we were able to go see Ollie after the surgery, I was stunned at the number of tubes and IVs coming from such a tiny body. Numerous machines attached to the tubes and wires were keeping the baby breathing, monitoring his oxygen, heart rate, blood pressure, etc. It was overwhelming, to say the least. Ollie had a breathing tube, and his little eyes were closed. Such trauma to a baby and his parents.
Becca and Alex lived at the hospital for nearly a month, sleeping in the room with him, showering in the family bathroom, and eating meals from the cafeteria, or whatever we brought down after work. Ollie made progress and was discharged, and Becca and Alex quickly established medication schedules, wound care, feedings, and so much more. Ollie had quickly made his way into our hearts and our family adored him.
Over the next several months, Ollie would have numerous infections, reactions to proteins in milk, and would be readmitted for a week or two while doctors tried to figure things out. He even had to be airlifted to this hospital at one point because his oxygen levels had dropped to unsafe levels due to an infection in his bloodstream. When Ollie gained strength and was able to go home, he thrived under the care of his parents, and I like to think, our family. In November 2017, Ollie had his second open-heart surgery.
Like before, we gathered at the hospital before his surgery, gave our grandson a big hug, and prayed with family before they took him to surgery. We waited for the progress reports from the surgical nurse and were relieved when the baby came out of surgery. It was difficult to see him hooked to all of the life-saving machines and seeing the tubes in his body, again, but this time we knew what to expect. Every beep, or sound from the machine worried me about his well-being. I didn’t understand all the alarms, and they scared me each time they went off.
Fortunately, Ollie’s recovery went well and he was home in time for Thanksgiving. We had much to be grateful for. The cousins and aunts and uncles came to celebrate with Becca and Alex. We were all nervous about getting too close to Ollie, as we knew a cold or germ could make him quite ill. It comforted me to know Ollie had a full-time mom nurse at home to help keep him healthy. Alex is an exceptional father, too.
Over the next several months, Ollie grew and did the normal things babies do. We delighted in his daily milestones: rolling over, sitting up, crawling, and walking. Nothing held Ollie back. His second surgery had improved his oxygen levels and this baby was on the move. We celebrated his 1st birthday with such joy and gratitude, knowing this baby and his parents had persevered through the unthinkable! Both sets of grandparents, aunts, uncles, and cousins, all came to share this major milestone with Ollie.
Our family began to learn a lot about Ollie’s heart defect and CHD in general. We also learned about Conquering CHD, a non-profit that helps educate parents and family members about heart defects. They also provided numerous resources to our daughter and son-in-law. I’ve attended events for Conquering CHD, and am always amazed at the strength of the children and their parents, as they too navigate the world of unpredictability due to heart defects. Our daughter Becca became quite involved in the organization – offering the perspective of both a mother of a child with CHD and that of a nurse who took care of these children following heart surgeries and associated complications. I’m so grateful to Conquering CHD and to Children’s Hospital Colorado for their expert care for our grandson.
For this Gramma, I still have moments of fear that Ollie might stop his heart if he falls, or that running and playing could trigger some issues for his heart. My daughter and her husband remind me that Ollie is okay and that he can be a normal little boy! I’ve had to overcome the fear of running with him or watching him while his parents attend to other things around the house. I was afraid to babysit Ollie if his parents went out for an evening alone. I was terrified I wouldn’t know what to do if he had a problem. It made me nervous when our families would meet in the mountains for a hike. I was afraid the altitude might cause him difficulties. He always seemed to manage just fine. I’ve had to, and still need to, overcome a lot of fearful thinking when it comes to Ollie and his future with a heart defect.
Ollie keeps me on my toes and is a fun-loving, adventurous little boy. He’s opened my heart and eyes to the value of living in the moment, rather than the future. He’s taught me about perseverance when it comes to health issues and unconditional love! He’s a young budding artist, like his Gramma Kiki, and loves to spend time in my studio. There are days when Ollie is a scientist exploring nature out in his back yard or on the hikes we take as a family.
Like many children with CHD, Ollie attends music therapy and play therapy to help him process some of the trauma he’s had through his surgeries. Still, he is engaged and eager to learn new things. While pandemic has changed the way our family interacts with one another, we count our blessings! Ollie reminds us all to celebrate life and live it with passion!
Vickie Krudwig is a mother, grandmother, as well as accomplished artist, author, and illustrator. Vickie was born and raised in Colorado – spending most of her life in the suburbs outside of Denver – where she met and married Mark, her husband of 45 years. Together, they raised three kids. Mark and Vickie have four grandchildren – Ollie, their fourth grandchild, was born with a congenital heart defect. Since they found out about Ollie’s CHD diagnosis, Mark and Vickie have been ardent supporters of Conquering CHD – helping to raise awareness and fundraise for congenital heart disease.