Heart Hero of the Month October 2022

Story by, ❤️Mom, Patty

Chester was born a bit earlier than we expected on April 28, 2018, at Broadlawns in Des Moines, only a few miles from our home. I had a complication and we wanted to make sure Chester stayed safe, so I was induced.

Chester had strong vitals all through delivery, and everything seemed fine after he was born, but there were little things here and there that seemed to indicate concern— the doctors thought they could hear a faint heart murmur. We were allowed to go home on the condition we would come back to the hospital the next day for a checkup. The doctors weren’t seeing the vitals that they wanted, and we got a chest X-ray. A couple of hours after the X-ray the doctor called and said that although Chester wasn’t in immediate danger, we should go to the Emergency Room right away. This was startling and confusing, and the whole experience was scary.

He had an ultrasound scheduled for the next day. At the emergency room, they checked his vitals got a “better” X-ray and we were sent home. We were at the doctor’s office every day after he was born.

On day 5, we had our first visit to the cardiologist. They performed an EKG, a chest X-ray and an echocardiogram, which was all scary for mom and dad, but Chester was very brave and gave us strength. That’s when we first learned he was born with 2 holes in his heart. He had a VSD and an ASD. Two holes across the septum of each of the atrial chambers and ventricular chambers.

We noticed Chester’s challenges with feeding from the beginning, not breastfeeding much, and not gaining weight at an ideal rate, not taking a bottle well. We learned that feeding difficulties are often paired with CHD. Our lactation consultant, Tera, connected us with help-a-heart. The Help-a-heart support groups, where we could talk with other parents of kiddos with CHDs, was a big deal for us as we were navigating our emotions and life as new parents and parents of a child with a heart defect.

In those early days after the diagnosis, there were many dark, sad feelings. It felt like our new baby, our first child could be taken from us at any moment because of this heart defect. The cardiologist helped to keep some of our fears at bay, and it was a great comfort to share our feelings with the HaH group, where we knew other parents were going or had gone through the same feelings.

Chester always seemed laid back as a baby, so it was difficult to pick up on his symptoms. We continued to monitor his heart through the first year. During that first year he continued to struggle with feeding and gaining weight, he was diagnosed as ‘Failure to Thrive’ at 4 months old and received an NG tube to help with feeding. At 8 months, Chester underwent surgery to receive a G-tube. Many other CHD kiddos also struggle with feeding along with other health issues, so the HaH group was a great resource and place to connect with other parents dealing with similar challenges.

After the first year of regular check-ins with the Cardiologist, it was decided that Chester should have open heart surgery to repair the holes in his heart. We had hoped the holes would close on their own as he grew, but they did not. We met with the surgeon, who was very kind and patient, and scheduled Chester’s surgery for May 14th, 2019; 2 weeks after his first birthday.

The period leading up to the surgery was a stressful time— really since he was first diagnosed, we were thrown into a completely new situation. We did not know other families with children who had CHD, or other children who did not eat orally, or other children who had to have open heart surgery. It was frightening and we felt isolated, even when we had support from each other, our families and friends. In the weeks before the surgery, Thom met with many other CHD dads from the HaH group, to talk through his fears of Chester’s approaching surgery. Based on hospital data and success rates for this surgery, I was confident the procedure would be a success. Although it was still difficult, I was at peace with our decision to go ahead with the surgery.

The surgery took place at Mercy in Des Moines. Some of our family visited and kept us company while we waited for the surgery to be completed. A pacemaker was used during the surgery. There were no complications. After the surgery it was discovered, there was still a tiny hole (VSD) remaining. The surgeon and cardiologist told us this sometimes happens, but that the hole was significantly smaller and would not cause problems for Chester. After the surgery, HaH brought us and our family food and someone from HaH visited us.

It was amazing how quickly Chester recovered. It was hard to see our tiny boy in a hospital bed, but he was brave and strong through the recovery. He smiled often, even though he also needed lots of comforting. We stayed at the hospital for 4 nights, and to our amazement, we were sent home on the 5th day with Tylenol and bandages!

After surgery, Chester began to steadily gain weight and physical strength. It was a great relief to have made it through and help ensure that Chester could lead a healthy life.

In April of 2022, we confirmed with Cardiology that the remaining VSD hole had finally closed completely. Chester’s heart has healed. Chester is 4 years old, and his health journey is not yet complete. We are still actively reducing tube feedings by working through Chester’s oral aversions, but now his heart health has dropped much lower on our list of concerns raising a little boy and we are thankful for that.

It has not been easy, learning to be parents and learning how to care for a child with special needs like Chester. We are so thankful for all the help we have received on our journey— all the doctors, nurses and specialists on Chester’s team; Help-a-Heart for being there for us when we needed to be around people who knew what we were going through; our friends and family for doing whatever they could to support and understand us.

Chester had 26 X-rays during the first year and a half of his life and spent a total of 10 nights in the hospital.  One of the biggest lessons we’ve had to learn is that not everyone is going to understand what you are going through and that’s ok. Our journey is different. What our family needs to do and what I need to do for my family may be different than what it looks like for other families. That is hard to accept at times. Some families can go to the park or splash pad and play anytime they want, but for us, it involves timing between feeds and equipment and food preservation, etc. When we travel, we must pack what seems like three times as much stuff as anyone else with kids would because of medical equipment and special food, etc. We wish for Chester to have as close to a regular, typical experience as any other kid does. So, we do our best to provide and advocate for him. We are so proud of him and how hard he works and how brave and strong he is. 

Chester is an amazing person, and he will grow up to be whoever he is going to be, not held back by his health.