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Mr. Moo

Mr. Moo

Male / 2 years & 4 months

Share the first part of Mr. Moo's story for readers on Sleuth! When and why did you start to feel concerned?

My husband and I have two beautiful kiddos, and tried for a few years to conceive another child. After many months of failed attempts, several visits to the doctor, many tests, tracking ovulation and all of that...we believed we couldn't get pregnant, and without explanation. The first two were very quickly conceived so we were left scratching our heads. We stopped using birth control of any kind and just decided to let whatever happen... happen. Fast forward NINE YEARS, we were going out of town and I wasn't feeling quite right. I felt pregnant, and sick. I had felt this way many times before and taken many pregnancy tests only for them to come back negative. I don't know what made me take the test, but I did, and wouldn't you know - I was pregnant! Mr. Moo was a healthy baby, or at least that's what the sonographer told us. I had my 20 week scan done at the peak of the pandemic, so it wasn't routine. I couldn't see the baby at all because of the room we were in, and by some fortunate twist my husband was allowed to be there (we've read many stories of partners not being allowed in.) I just remember the scan taking forever, well over an hour. To top it off, the sonogram was really uncomfortable. The tech was pushing really hard and I didn't know why, I just wanted to know our baby was healthy and be able to leave. When it was finally over, we walked out with a "Congratulations! Everything looks great, you have a very healthy baby boy!" Two days later, we received a phone call. It was the genetics office calling because they saw "something concerning" and wanted us to have another ultrasound, at a different facility, with special doctors. They wanted to do a genetic workup, and "discuss our options." I finally asked, "Do you know what you're looking for?" "Oh, I'm sorry!" the nurse replied, "A cleft lip and possibly a cleft palate." The news felt like it stopped time. Then the questions came. Mostly, what did we do wrong? What does repair look like? Quality of life? Was their co-conditions? It was like a flood. We just had so many questions. We did the genetic workup, and we were told there was no reason they could see that if Mr. Moo did in fact have a cleft - they had no idea what caused it. It just happened, and long before I even knew I was pregnant. We then were taken back to a room with a sonogram tech, and we had a level 2 sonogram that was reviewed by a doctor, and she and the genetics team, and cleft team came into the room to confirm the diagnosis. The baby for sure had a unilateral cleft, but we wouldn't know about the palate until he was born. Mr. Moo was born with an incomplete bilateral cleft lip and palate.



Female / 10 years & 5 months

Share the first part of France's story for readers on Sleuth! When and why did you start to feel concerned?

I had COVID starting from July 13th. While my family wasn't tested, I assume they all got it, too. France got a fever starting on July 16th. I started to get concerned on September 4th when she returned back from school saying, "I am hot." Her temperature was 99.4. I called the clinic and asked, "Should I be concerned? Is it a cold? What should I do?" My daughter told me not to worry. They were out in the sun at school then went back inside where there was A/C, so she said that the drastic change in weather probably made her sick. The nurse told me that if the temperature gets higher, I should go to the ER. I couldn't do much. That evening, we went out for dinner. She fell asleep in the car, and her eyes were starting to get red. I woke her up in the restaurant, but she kept putting her head down. I kept telling her to eat - she's normally not a picky eater - but she said, no, I'm tired. She started eating a cheeseburger and she then she vomits one time. As I saw her vomiting, I lost my appetite because I was worried something was wrong. I told my husband, let’s just go. I’m going to rush her to the hospital, let’s see what’s going on. I feel like she got COVID again. I thought she had a cold. I'd tell her, 'let’s go to the hospital,' but she said, 'No, I feel better." I went home, took her temperature and gave her Motrin. She broke the fever every 8 hours. Then at 5am, another fever was kicking in. I gave her Motrin, another 8 hours later it stopped, and then started at 6pm again. As soon as I took her to the children's hospital, her fever was at 101, and had started having diarrhea. She had pain when she was eating so whenever she was eating, her stomach would hurt. Whenever she coughed, her chest would hurt. I told them everything and they told them she had COVID. They said that it looks like just a stomach bug, if she doesn’t get better in 2-3 days, then bring her back. On Sunday, you know, we to grocery shop, and we made breakfast. She’s a good eater, she’s not picky. I notice she didn’t want to eat anymore. "I'm just going to drink. i’m not hungry. It’s just that my tummy is hurting." The next day, on Labor Day, I took her to children’s hospital in northwest. By now, her fever would've otherwise be broken; she’s good at breaking down fevers by 2-3 days. She’s now having stomach pain when she eats, more diarrhea, vomiting more often, eyes were super read. "No, Mom, it’s still a stomach bug. It’ll last up to 5 days." I felt like i was walking out with no answers. My gut was saying there’s something wrong and they wouldn’t help me. I called my husband as soon as I got out, they say it’s a stomach bug. He said, they’re probably right. I know that when she’s sick and something is an infection, it doesn’t get treated right away, the fever doesn’t go away. I recognize my child. My husband and I were listening her sleep. She was breathing like she’s running. I woke her up and she said my tummy is hurting really bad, it’s hurting a lot. I took her to another hospital, Washington Regional hospital, and I told them, you know what, she has been in children’s hospital with a stomach bug. They said: we need to take her to the COVID ward, this is how COVID starts. I said, "this is not COVID, we already had it in July. The time lapse is too soon to rewatch it because she should still have antibodies. They said, "Nope, we still transfer to that COVID section. We’re still going to do that." At that point, i didn’t know what to argue. They’re the doctors, they know more than I do. I had the baby with me and her sibling. so they do a CT scan, bloodwork on her, and it comes out to be she had an inflamed gallbladder and liver. In the CT scan, it showed she had a fatty liver. She had really swollen lymph nodes on her stomach. She was super dehydrated. She wasn’t eating anymore. She quit eating. Even water would hurt her stomach. Anything she ate hurt her. And she would get nauseous.



Female / 30 years & 2 months

Share the first part of T.'s story for readers on Sleuth! When and why did you start to feel concerned?

My younger daughter, T. , would go to a birthday party - which she hated to do, because she was so anxious - and come back and tell you in detail the colors of every girl’s dress. For 10 girls, she would tell you what they wore, what the pattern was, what the color scheme was. Then, you would sit down with her and say, “This is the letter ‘A’” in a book and, on the next page, “This is the letter ‘A’”. You would then turn the page again, and point to an “A,” and say, “What is this?” And she would say, “I don’t know.” We benefited from birth order. Having an older daughter served as a point of reference, developmentally. My older daughter did things very early, but even accounting for that, I noticed disparities. The other reason T. hated going to the birthday party was because she didn’t like the social dynamics. She said, “Well, if I go, then this girl feels left out.” She had lots of emotional intelligence. I first started noticing T.’s learning differences at about three-and-a-half or four, and she didn't learn to read till she was about eight or nine. I learned more in hindsight. If you look, you also see this anxiety in children like T. Some of that may be her personality, but in my experience observing T. and other kids with learning differences, they felt like they weren’t meeting some sense of expectations. And that feeling created anxiety. In preschool, it was fine. But then, in PS6, it was hard for T. because there was constantly this sense of external benchmarks. Carmen Fariña, who became the Chancellor of New York City Schools, was the principal of PS6 at the time. I am eternally loyal to her. She put a cluster of kids together with teachers who were veterans and really knew what they're doing. They provided T. with a resource room teacher who was on the board of the National Dyslexia Foundation and taught at Hunter. In New York City, it's not like you're out at play all the time, and have other ways of expressing your capabilities. In spite of their efforts, school is pretty constrained. Certain places like PS6 were academically focused. I think this leads to an emotional toll. But I will tell you: when I go and read the assessment they did of T. at the age of five, everything is still true in her adult life. It was brilliant. They identified her issues with pattern recognition and sequencing. Now, T.’s a web developer, and she lives in Austin. One of her biggest struggles is: “Oh my, there's 10 projects to handle. What do I do first?” That problem of prioritizing tasks. At the age of 28, every once in a while, she still calls me up and goes, “Okay, I just need a little help. What should I do first?” I expect (and hope) she'll do that as long as I'm alive.

anxiety observed at 6 years & 0 months

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