By necessity, I have to pay very close attention to what is going on in the world of infectious disease as the parent of a medically complex child. In the weeks leading up to COVID-19 reaching pandemic status, I began to circle the wagons, knowing that despite whatever measures were taken, we were going to have to go back into isolation.
My 3-year-old, Timmy, was born with a congenital heart defect, and he is part of the at-risk population should he contract the virus. When the media says that this virus is deadly to those with underlying health conditions, you breathe a sigh of relief because that is not you or your children. It is my child.
I found out that Timmy would be born with Hypoplastic Left Heart Syndrome at my anatomy scan when I was about 21 weeks pregnant. He was my third baby, and with the demands of life as a family of four, my husband was not even able to be at my appointment. I was alone, and it felt surreal. I thought, “This is something rare that happens to other people.” Congenital heart defects affect one in 10 children, so it only seems that way until it happens to you.
My pregnancies were always considered high risk due to my Ehlers Danlos Syndrome — a disease that weakens the connective tissues of your body — but having such a sick baby meant even more precautions had to be taken. On the day Timmy was born, there were 18 people in the operating room, not counting me, my husband and my doula. Before I was even out of recovery, a team of paramedics in flight suits came in with Timmy in an incubator so I could see him before flying him in a helicopter to Children’s Hospital of Pittsburgh.
My husband left to be with Timmy, and I was left alone at Magee. When I finally got to the cardiac intensive care unit three days after my C-section, I was allowed to hold my baby for the first time. At four days old, Timmy had his first open heart surgery done by the amazing Dr. Victor Morell. Timmy came out of surgery on life support, with his chest still open. I could see his heart beating through the wrappings over his tiny chest. He had a heart transplant in his first year of life.
Our daily life since then has consisted of home nurses in our home day and night, a few of whom are like family by now. We also have a team of therapists helping Timmy learn how to talk, breathe without the tracheotomy tube, eat, sit and so on. We have relied on grocery and medicine delivery because going out in public, especially during cold and flu season, is just too dangerous.
Timmy has been admitted to the cardiac intensive care unit and needed a ventilator because of a common cold. During the recent measles scare, we were terrified to go out. Because of his anti-rejection medications, he cannot receive live vaccines. When he was exposed to influenza B this past winter, he was put on Tamiflu because the possible side effects far outweighed the risk to him if he caught the flu.
Being two-and-a-half years out from transplant has been full of victories that may seem small to other families, but are huge for us. Timmy was able to start going to school very recently and he absolutely loves being around other kids. We still cannot do anything so cavalier as to take him to a McDonald’s Play Place, but he did have his first visit to Eat N’ Park a few months ago.
Being fairly isolated with frequent temperature and oxygen saturation checks are still the norm for us, but calls to his pediatrician and transplant team have dwindled to about once a month. Hospitalizations due to illness have gone from twice a month to twice a year.
As Timmy’s health has improved, we have been able to connect more as a family. Whereas before he was secluded a lot, we are able to include him in family life more often. Timmy’s siblings like to congregate in his room frequently because he has a TV in his room and a big bed they can all lay in together. There have even been changes in how I am able to live my life. I could start going out with friends and had even started taking a yoga class recently. The huge step for me was going to be attending a concert for the first time since Timmy’s transplant.
I have always had to be careful about being exposed to illnesses myself so that I did not bring them back home to Timmy. Now with this new pandemic, we are back to making our world very small.
My husband is an essential worker whose position does not allow him to work from home. This causes stress to our family, as we cannot completely isolate. We have an entire sanitization routine when he walks in the door daily. As he walks up the stairs to shower, I follow behind sanitizing in his path. Everything is a risk now.
Many people who I considered to be friends and who have often expressed how much they care for Timmy have been posting on social media about how most of the population will be just fine if they contract coronavirus. They are sharing pictures of them having fun at bars and clubs, and a general sense of: “It only affects old people and the sick. Who cares?”
I care. Timmy has a suppressed immune system and has respiratory problems to begin with; contracting this virus would affect his ability to ever breathe without a trach — at best. It could actually kill him.
My child, who survived three open heart surgeries, life support, two strokes and managed to get himself to a point where he was healthy enough to attend school could die because of people’s actions. And all because they see going out with friends and “living their best life” to be more important than keeping the vulnerable population of Pittsburgh safe?
By acting so cavalier, people are telling the vulnerable among us that their lives do not matter as much as a parade or a night out at the bar. Pittsburgh, stop the spread by staying home.
Meghan Wooldridge lives in Bellevue with her husband, Dave, and her three children- Molly, 6, Conan, 4, and Timmy, 3. If you want to send a message to Meghan, please email firstname.lastname@example.org.
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