It felt like our world was being turned upside down.
When our son, Hamp, was hospitalized in respiratory distress at 3 years old, our journey into the CHD world began. I will never forget the way the ER doctor sat down and quietly observed our son in the Scottish Rite ER, suspecting more was going on after looking at his history of respiratory and choking issues. Before this visit, Hamp had been hospitalized several times in respiratory distress. He’d also had choking issues.
After the ER doctor’s supervision, Hamp was admitted under the care of a pulmonologist. A series of tests began the next morning. First, there was an upper GI swallow test. They confirmed that Hamp had significant compression on his esophagus. Then came the echocardiogram. A panicked feeling rushed over me as the echo went on for over an hour. I knew we were going to get more bad news as I watched the sonographer consult with a colleague, then request a cardiologist view the images live as they continued.
It was such a scary and uneasy time – it felt like our world was being turned upside down. After the echo, we waited a few hours until the on-call cardiologist came in to explain the results. They were shocking. Honestly, it took a while for it to sink in and another while for us to understand it all. Hamp was diagnosed with a rare complex vascular ring called a circumflex aorta, LPA atresia and bicuspid aortic valve. The next test he’d need, we were told, was a CT scan.
But getting to the next step would take a while. Hamp continued to struggle to breathe. He couldn’t get well enough to be sedated for the scan. I felt so helpless, knowing that more tests were needed. I felt stuck, too, since we weren’t able move forward as we waited for Hamp to get stable. Finally, Hamp had a heart catheterization on Valentine’s Day in 2017. His first surgery followed that summer. Dr. McKenzie placed a BT shunt to his left lung, which was the first step of addressing his missing LPA. He was expected to have the BT shunt for 6-12 months, but after several months it was clear that he needed his second surgery sooner.
The second surgery, also performed by Dr. McKenzie, was much more involved and lengthy. He was in surgery for nine hours as his surgeons performed the “Uncrossing” procedure to untangle his aorta and branching arteries which were compressing his airway and esophagus. So that Hamp would no longer have breathing and swallowing issues, his doctors restructured his aorta and arteries in a better way. They also implanted a LPA into the main pulmonary artery and Dr. McKenzie was able to create this artery from an extra section of his aorta that wasn’t needed after it was restructured. This was amazing news post-op!! The hope is that it will last longer and hopefully not need surgical intervention since it is his own tissue. Overall, surgery was successful, but we weren’t done. Late that evening, Hamp required a second exploration after he experienced internal bleeding that wasn’t properly draining out through his drain tube. That night was extremely traumatic as a parent, but we continue to be so thankful for all the amazing doctors and nurses and the work they are able to do.
Even with all the ups and downs, I have been inspired by the great courage, bravery and positivity Hamp has had through it all. He calls Egleston “my hospital” and leading up to his second surgery he would ask daily, “When do I get to go to my hospital?” It’s truly a testament to what an amazing place CHOA is for our kids. They do an awesome job making positive memories for kids who are going through really difficult medical situations.
We hope there won’t be any additional surgeries (at least for a really long time), but if there are, we have full confidence in the doctors and nurses at Sibley and CHOA. Dr. Glen Iannucci has been so helpful to us. He’s such a committed and caring physician. He always took his time explaining and answering all my questions – and I had A LOT of questions.
Our child-life specialists, Phyllis and Amanda, have been a great help, too. They play such a key role in helping both the parents and kids feel more comfortable and prepared for procedures and surgeries. And of course, Dr. McKenzie has been nothing short of amazing! He is such a gifted and caring surgeon! We are so thankful he came to Atlanta. We’re a family of strong faith and we truly feel that God brought him to Atlanta to be an instrument of healing for our son.
After Hamp’s diagnosis, our story got an interesting twist (if you will). Hamp is one of four kids, and his bicuspid aortic valve defect can be hereditary. On our cardiologist’s recommendation, we had all our kids screened for CHD. We found out that our older daughter also has a vascular ring and our youngest son has a left aortic arch with an aberrant right subclavian artery. They have both been symptom free or just had mild symptoms. But it’s just really bizarre and is another added layer to our story. I’m thankful we know, but pray they don’t have to ever endure what Hamp has been through. We have gone through the genetic testing and are awaiting additional results for more conclusions about how genetics played into these aortic anomalies in three of our four kids.
If you’re just starting this journey, I would tell you to take lots of deep breaths. Don’t be afraid to reach out for help and accept help when it’s offered. Unfortunately, it’s generally not a short journey, and even though we’ve endured a lot of heart ache we’ve gained deeper connections with the relationships in our life because we allowed others to come alongside us with their love and support. Get involved with the Kids at Heart group. CHD is a club no parent willingly chooses, but when it becomes your reality, it means a lot to have the encouragement from people who truly understand what you’ve been through and offer their support.
We are learning to accept that this will be a lifetime of care and monitoring, but today, Hamp is doing great! He’s gaining strength and increasing his stamina each day. He finally has a normal appetite for his age and is gaining weight. He’s Hope and Will’s number one fan and he loves to ride his bike, dance and tell jokes! #1in100 #CHDAware
PROFESSIONAL PHOTO: Dylan Blue Photography