In early March 2020 when the first cases of Coronavirus and subsequent Covid19 were identified in my home state of Ohio, I began to feel concerned. We are a large family, but my biggest concern was for our youngest child, Cedar, who has Down syndrome. What I couldn’t find as the pandemic raged across the USA was any cases of individuals with Down Syndrome contracting Covid 19 and how it impacted them. Then I did hear of one, a fatality of an adult man with Down Syndrome from Covid 19 in South America and then one in New Jersey and just after that, this story, Max’s story of contracting Covid 19 and recovering from it as well. This is the story I will share, Max’s story of Down Syndrome and Covid 19 a recovery story written by his mom.

If you know of another family who has a child with Down Syndrome who has recovered from Coronavirus Covid-19 please have them contact us to be featured.

Covid 19 and Down Syndrome a sweet baby boy smiling

Max’s Story

Max was born on June 7, 2019. He is our second child; we have a daughter as well who was 19 months old when Max was born. We wanted the kids to be close in age and at 35 I felt like my clock was ticking. He came 3 weeks early which was a surprise to us, I expected a labor free birth as I was scheduled for a repeat C-section. Max’s down syndrome was no surprise, I had found out prenatally via amniocentesis at around 22 weeks pregnant.

Like many diagnosis stories, I had some good doctors that encouraged me about his diagnosis and some not so good doctors too.

During my pregnancy I was referred to see an MFM and cardiologist for some additional ultrasounds to search for any “abnormalities” that come with having a down syndrome diagnosis. Fortunately, they found nothing and released me from their care. Max was born very healthy and only needed to be on oxygen for a short period in the nursery. After a few days in the hospital we left for home together.

Fast forward 9 months. The first cases of corona virus have been detected in the United States and it’s predicted to spread across the nation. My husband is a retail pharmacist and I work as an engineer in a manufacturing facility, at this point we both are still reporting to work. We are fortunate to have my mom live with us and care for the kids at home while we work. We jokingly refer to her as our “granny-nanny.”

As the corona virus was picking up speed, my mom was out of the country with my brother enjoying a much-deserved tropical vacation. My husband’s mom had come to help us with the kids while she was away. We started to joke they may get stuck at their Caribbean resort as the president began to shutdown overseas travel. Fortunately, they made it back to the US just before air travel is stopped and the state begins to shut down.

Approximately one week after her return is when we started to experience symptoms. My husband thought he had a sinus infection and experience a mild fever. My mom had a sore throat and some congestion. I had a slightly runny nose and thought it was from the swinging highs and lows of Ohio weather. I didn’t think much of the symptoms at that point. That weekend was March 21, our first world down syndrome day. I was excited for my local down syndrome group organization’s festivities, but they were cancelled due to the threat of the spreading virus. So, I put on my mismatched socks and we celebrated at home.

I noticed Max was fussy and tired that day, unusual for him. He developed a slight fever that evening. I also started to feel funny and realized I also was running a fever. I gave Max some Tylenol and took some myself and hoped we would feel better in the morning.

Things did not improve over the next few days. Max’s fever continued and he had a very mild cough, my fever lasted another day and then I started feeling very achy and fatigued. My mom was getting sicker too and in addition to the flu-like fatigue and aches also had chest pains. My husband had recovered by the time the weekend had passed and our 2-year-old never became ill.

That next Monday I stayed home from work and contacted my doctor for a tele-visit. He said I likely had the flu, to stay quarantined for at least 7 days, and sent a prescription into my local pharmacy for some cough medicine. He told me I did not meet the demographic to be tested for covid19. I also sent an e-mail to Max’s pediatrician to see if we should be concerned about his symptoms. Max’s fever was well controlled with Tylenol and after it kicked in, he was mostly back to his normal self but seemed extra tired.

His cough was nearly non-existent.

However, she called the next day and said to bring him in immediately. The plan was to test him for flu and if it came back negative, he would be tested for covid19.

Getting a covid19 test at this time was difficult. She explained she was able to get him a test because he has down syndrome and he had some mild breathing issues as a small baby (silent reflux caused him congestion that is now easily controlled with medication). I had taken that day off work because my mom was so ill, she could not watch the kids. I packed Max up and we went to the doctor. His flu results came back negative and so we went to our local drive-thru testing center for the test. They told us the results would be back in 5-7 days.

While waiting for the results we were to keep quarantined. My husband went on FMLA and I started working from home full time. This worked out well because my mom was sick so he could watch the kids. While my mom and I seemed to get sicker each day Max woke up fever free by Friday. We were very relieved! He was sick for approximately 5 days total. At this point mom and I were miserable, my mom having the worst of it. She equated the illness to what it feels like after you receive chemotherapy treatment (she had recovered from cancer a few years back).

I had never felt so tired and miserable from a cold in my adult life. After several more days I started to feel better but now had new symptoms, diarrhea and I lost my sense of smell and taste. My husband had also been complaining he could no longer taste or smell. We were surprised when watching the news one night and they revealed this was a new symptom of covid19. At this point we were almost certain Max’s test results would come back positive.

We waited and waited and waited for the test results. By day 8 I contacted the doctor to inquire about them. Apparently, what they did was sent them for a virus panel first and then once that panel came back negative, reflexed them to the covid19 testing. It would be another 5-7 days before we would receive results. She apologized and we continued to wait. On day 13 we received results; they were positive for covid19. By then we were all mostly recovered, my mom and I still fatigued from the long illness but on the mend.  

We’re not certain where we got the virus. It could have been my mom bringing it back from vacation with her, but my brother who had traveled with her had no symptoms. My husband is in contact with plenty of sick people at the pharmacy he works at so perhaps he brought it home. Many people I worked with also had been ill so it could have been me. We were all very careful to wash our hands after returning home and throughout the day but at the onset of symptoms social distancing wasn’t being very well enforced. Regardless, we are very lucky to have recovered without hospitalization and I hope this story may give those with babies or young children, down syndrome or not, some peace of mind.

Kristen is 36-year-old mother of two who works as an engineer in Ohio. When not working she enjoys spending time with her family, doing crafts, and playing games

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