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My Daughter Is High Risk, So My Family Hasn't Left the House Since March

Schoenberg family
November 02, 2020

By Jillian Schoenborn, as told to Jennifer Clopton

After your child’s life has already hung in the balance once, you’re willing to do just about anything to keep that from happening again. That’s led our family to do things, in this pandemic, that we never imagined we could or would ever do -- like isolating at home for 7 months and keeping all 4 of my children home for school.

My family is really good at handling the unexpected, but this is the most challenging year we’ve ever experienced -- harder even then when our daughter Hadley needed a liver transplant. That happened 5 years ago when she was 9 after the rare liver disease she was born with, biliary atresia, worsened and we were told she wouldn’t survive without a new liver. She was on the transplant registry list for 5 months and was very, very sick before we got the call. Her Gift of Life came from a sweet 23-month-old baby named Aubrey, whose family we have since connected with through letters and social media and are forever bonded with. Before we knew who her donor was, Hadley called her Sunrise because the sun literally came out again in our life thanks to this precious child and the amazing decision her family made in their darkest hour to save my child’s life.

Hadley had massive complications in the weeks after her transplant, but she recovered and has been doing great. She still has to take medication the rest of her life to suppress her immune system so that her body doesn’t reject her donated organ. That makes her more susceptible to illnesses of all kinds, so we’ve always been careful in flu and cold season. She also requires regular blood draws and doctors’ visits.

Still, before the pandemic, our family was living a full and relatively normal life thanks to Aubrey/Sunrise. My husband, Dan, and I have four children -- Jackson (15), Hadley (14), Nola Belle (10), and Tayah (8), and all of them had a very busy schedule of school, sports, and activities. I was a kids’ volleyball coach, and my husband is a gastroenterologist. Life was super busy ... and then COVID-19 arrived and everything changed.

We quarantined immediately -- understanding the risk to Hadley -- and we haven’t yet come out.

Georgia’s governor has ordered a shelter in place for immunocompromised people (like Hadley), but we would be doing that even without the order. We know it’s what needs to happen to keep Hadley safe. Truthfully, it’s important for her 15-year-old brother too. He has a severe case of pectus excavatum -- his breastbone has sunk into his chest -- so we worry what the virus would do to him with his breathing compromised from his lungs being squeezed.

Because of these risks, my children and I have not left the house, gone into a store, visited anyone else’s house, or even gotten carry-out food for almost 7 months. My husband, Dan, a gastroenterologist, is required to work outside the home 2 days a week, so when he is in the house, we take extraordinary precautions. He social distances even inside and wears a mask to protect us. We pulled the kids out of all sports and activities. I gave up coaching, and we’ve had to take a whole new approach to school too.

Hadley is in a private school that does live-streaming, and her siblings are all doing a combination of public virtual school via Zoom with additional work done on their own or with me. I’m a certified teacher, although I haven’t been in a classroom for years, and I will tell you -- this is hard. It’s a lot of screen time and that is challenging.

But there’s no question that the hardest part of this experience for us is dealing with the stigma we feel from people because we continue to isolate. A lot of our friends are living life like there is no pandemic and think we’re crazy because we aren’t. Many, MANY people don’t understand our situation and are very judgmental about how we are handling keeping Hadley safe. This is baffling to us. I understand pandemic fatigue, but this virus can be fatal for children like mine. How can people not understand the relentless fear of what this virus could do to two of our children?

The medical team that cares for Hadley is telling transplant families that they have to assess risk versus benefit when making decisions in a pandemic. Well, the risk is death, so there is no benefit big enough for us to risk being exposed to the virus. For families like ours to go out right now requires trusting people to do the right thing when it comes to the virus, and that’s clearly not possible. Every day there are stories about people who knew they were exposed or even had a positive test and yet they still go about their life -- sending kids to school, hopping on airplanes, and interacting with others in the community because they don’t want to quarantine for 14 days or don’t think the virus is serious. That sort of behavior is why we need to continue isolating.

I know for a fact my kids would be exposed at school because all the schools around here have COVID-19 cases. I know of families who have had children get fevers and they send their other kids to school and brush off the facts about COVID. I know of people who should have been tested but are not being tested because they don’t want to inconvenience their life with a 10-day quarantine. COVID seems like the new lice; no one wants to admit their kid has it, so they continue to send them to school despite having symptoms.

So we stay home because we know it’s what is best for Hadley. If you ask any one of my other kids, they will say they miss their friends and they want to go to school, but they want to keep Hadley safe most of all. That brings me to the rewarding part of this, and there actually is so much about this year that has been positive. I actually feel like the kids are getting MORE educationally than they would have ever gotten in in-person school. My third grader and fifth grader are required to take typing club now, and they’ve become better typists than my eighth grader and 10th grader. All of my kids are learning to be resilient by managing schoolwork in new and different ways. They have a more in-depth understanding of concepts because they are forced to ask questions and problem-solve without a teacher keeping them on track.

With more time at home, they’ve also learned to cook -- with a few mishaps and lessons learned along the way. As a family, we are spending more quality time together than ever, and that’s been an incredible bonus too. We’ve had family meals nightly for 7 months straight, lots of board and card games, daily family walks, time outside, and no rushing to go anywhere. We have gotten so healthy by not eating out and by exercising every day, and the kids are getting more sleep because we don’t have to get up early for school.

What’s next? That’s the overwhelming question we hear from friends and family -- and they don’t like the answer. Until we feel like it is safe to do more and we get the go ahead from her medical team and the governor with the executive order for immunocompromised people, we will continue to do school at home, stay isolated, and do what we need to in order to protect Hadley.

Moving forward, I don’t think we will ever be the same again, and that’s not a bad thing. This time has forever shaped us in many good and meaningful ways. We are more tightly bonded as a family, and we have reprioritized our life. We have learned that we were over-scheduled and lacking time together. We have lost some friendships this year -- people who don’t understand why we are doing what we are doing. But the ones that we’ve maintained are clearly far more valuable.

My kids now understand that you can do anything when something and someone is important enough to you. We have also once again been reminded of the lesson that Hadley’s sweet donor, Aubrey, taught us: No matter how challenging the days are, there is always a sunrise to look forward to.

Jillian Schoenborn is a married mother of four in Georgia and a Donate Life advocate who is passionate about increasing awareness of the importance of organ donation -- not just for adults, but also for children.

 

 

 

 

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