Share the first part of Easton's story for readers on Sleuth! When and why did you start to feel concerned?
Easton's story started before he was born. At about 28 weeks pregnant, I found myself very sick in the ICU with an infection, pneumonia, and relentless fevers. At the time I was blissfully unaware of what cytomegalovirus (CMV) was. However after weeks of testing, I was diagnosis with CMV and told that there was a chance that my child would be born with a congenital form of CMV as it could pass through the placenta. However, I was told to not worry and that it was unlikely to cause issues. This was far from true for us and so many. A few months later, Easton was born! At 36 weeks and 5lbs, he was doing well but had issues from the get go. He did test positive for CMV at birth but I was again reassured that he would be fine, and there was nothing to do for it. He was jaundice at birth and didn't as eat much as I felt he should. Every time he ate he would spill so much milk around his mouth that it soaked his shirt and mine. He sounded like he was gargling milk when he drank, almost like he was drowning. It was so concerning to me, but it was brushed off by doctors very frequently. I took him to his pediatrician, lactation consultants, chiropractors... I was desperate for help, He cried all the time, slept restlessly, and developed thrush. He was diagnosed failure to thrive at two months old weighing just 6lbs 7oz. This is when we were able to move to a larger children's hospital and start on this journey!
Share the first part of Xam's story for readers on Sleuth! When and why did you start to feel concerned?
My pregnancy was fairly typical until my 20 week anatomy scan when they found I had placenta previa and Max had an echogenic bowel so I was referred to an maternal-fetal medicine doctor (MFM) for further testing and monitoring. The placenta previa corrected itself but the MFM doctor did a TORCH panel which did show that I had CMV antibodies so both the MFM and my OBGYN said I had already had CMV (most likely as a child) and everything was fine. Max was born in March 2018. He was 6lbs and 14oz with the sweetest little face. Max was also covered in a petechia rash on his face, shoulders, chest and back. I asked everyone from his OB to the pediatricians to the nurses about it and they all said it was from the traumatic birth, except his birth wasn’t traumatic at all- it was easy. Especially compared to his older brothers birth. Everything was fine until his one month appointment when I was told his head circumference had fallen off the growth chart. I was still told not to worry but Something inside me kept saying something wasn’t right Fast forward 4 months- we had been in and out of the pediatrician for constant feeding issues, extreme crying and tightness/rigidness in all 4 of Max’s limbs. Pediatrician continuously chalked it up to severe reflux as multiple people in our family have it as well- including Max’s big brother. We were referred to a GI who told us he didn’t think it was reflux but to keep his head circumference on our radar as it still hovered anywhere from the 1st-3rd percentile just depending.
Share the first part of J.'s story for readers on Sleuth! When and why did you start to feel concerned?
When my son was born, I said, “His breathing sounds super-congested.” The doctor said, “Yeah, he probably swallowed a little amniotic fluid. Don't worry about it.” I saw his chest pulling in a little bit when he breathed, and I kept on questioning. (Now, I know those were called “retractions.”) They said, “Don't worry about it. That's normal.” He was born at 35 weeks. We knew that potentially at 35 weeks there could be some minor respiratory issues. But he was six pounds eight ounces. He looked great. His Apgar scores were really good. All the things that we use to measure the typical stuff were good. Then, my husband pointed out that he was not really responding the way our other son had responded 24 hours into being in the world. Bright lights weren't really making him squint. A bunch of things just weren't happening that we thought were normal. (My first son is a healthy, typically developing six year old now.) He also has what I call his “cute” ear, a malformed ear. That was something I also pointed out, and the doctor said, again, “Listen, your kid is healthy. Don't worry about it. He's okay.” My son was born in Jamaica because both my Husband and I had successful careers there. It was a private hospital with a reputation for great doctors. So we thought, “We got this. This is okay. We didn't need to come back to the U.S. to have a baby.” They transferred him to an ICU unit because of his breathing. He had a little jaundice. We were in the ICU unit for about a week. While we were there, I kept on asking questions: “You know, when he cries, I noticed his mouth is a little lopsided.” (“Don't worry about it, Mom. It's not a big deal”.) “His breathing is still a concern to me.” (“Don't worry about it. He doesn't need oxygen. His O2 is fine.”) He wasn't feeding well, and they said, “Well, sometimes with babies it just takes a little time for them to figure out feeding.” They discharged us from the ICU because they had more critical kids. They handed me a syringe and said, “Just keep squirting some milk in his mouth until he gets sucking under control, and head home.” I thought something doesn’t feel right. We went to our pediatrician, and he said, “Listen, I hear your concerns. I can refer you to any doctors you want. Yeah, his breathing looks a little off. Maybe he has something like a PDA (patent ductus arteriosus), which is very common in a lot of kids.” He sent us to a cardiologist who seemed to be rushing. She said, “He has a minor PDA. It's nothing to worry about.” My husband said, “Listen, this is actually good news. It's not like he has a major heart condition.” But again, something felt off. We went to an ENT (ear, nose, and throat doctor). They said, “Everything looks great. His airway is perfectly normal.” I thought, okay! But again, he still wasn't feeding. We just kept on pushing and pushing. It was constant: “Mom, you're freaking out too much. There's nothing to worry about. It just takes time.” But while this was going on, he was losing weight. I could see it. I mean, I could see it. He was the most miserable baby as well. My other son was such a happy little baby. I know kids are different, but there was just something about it that didn't feel right.
deafness observed at 0 years & 0 months
Share the first part of C.'s story for readers on Sleuth! When and why did you start to feel concerned?
My son (nicknamed C.) is a sensory seeker. He's very active. At 18 months, he was constantly moving and doing a lot of physical activities that I didn't see other kids his age do. He also had an enormous amount of trouble self-soothing at night to go to sleep. He was having trouble going from a highly aroused state to a calm, relaxed state where he could fall asleep. We tried sleep training. We tried to do all the typical things that people tell you to do at that age. None of it worked. I just felt like something was off. Like there was something else going on. And when he would wake up in the middle of the night, which a lot of kids that age still do, he just couldn't go back to sleep. He was in a highly vigilant state, wide awake. It was at 18 months that I first mentioned this to his pediatrician. She said, “Well, his nervous system is still maturing. Let's see what happens”. As the months went on, and he started to walk, we noticed that it was like he had no sense of where he was. And then feeding challenges started: he was a really good eater until he wasn't. It was very dramatic. We felt like there might have been some sensory-related stuff going on with either what we were putting in his mouth or what he was seeing. We still struggle with feeding. I mean, it's gotten better. But picky eating was a big indicator of his condition. Then there was the activity level and the lack of focus. C. had a hard time staying focused on one activity. My son was born extremely premature at 24 weeks. Not everybody knows that 24 weeks is the line of viability. He was literally four days after the line. It was a very traumatic birth for him and also a traumatic labor for me. He was born weighing 705 grams. I'll tell you why I say it in “grams.” Because when they are born that early, every gram matters. They consider your probability of surviving partly based on the number of grams you weigh at birth. After he was born, all the nurses kept coming into the recovery room saying, “Oh my! He's 705 grams! Isn't that amazing?” There was like this celebration. He was a little bigger than normal for 24 weeks, but 705 grams is actually one pound and nine ounces. He was tiny. He fit in the palm of my hand. He was very, very small. He spent about five months in the NICU, and it was a very complicated NICU journey for him. Every child in the NICU has their own story. He was challenged with a host of medical issues that almost claimed his life, and also were potentially going to impact his development. When we came out of the NICU we were linked with Strong Start, which is Washington D.C.’s version of early intervention. We started Strong Start at about four months of age, if we correct his age for his premature birth, or eight months old from birth. We were working on some very basic things around gross motor skills, making sure he was moving his head right, that he was making eye contact, some of those typical infant developmental milestones. From the beginning, I had a sense of vigilance around potential delays in his development. In that respect, I think my story might be a little bit different than most families. I already had a heightened awareness that things were probably not going to be typical. The challenges that I had were really the struggles with the system. We knew C. was going to need a lot of therapy. We knew that he was potentially going to be diagnosed with a host of medical conditions that we couldn't predict in his early infant years. I was very proactive about it. But it was still very, very challenging to get the right services, to know who the right people were to talk to, to get coverage from insurance. I always tell people who have questions about what it is like to have a child who was born early or has special needs: this is all really hard. You have the typical challenges of raising an infant. And then you also are a medical coordinator, you’re an insurance advocate, and you're an expert at X, Y and Z diagnosis. You have a host of different hats that you have to put on every single day. The system is not always cut out to support you, right? It's almost the opposite. There are some days where I wake up feeling, “Okay, I'm in fight mode. Let's go!” I have to fight to get through the day, to be able to accomplish the things that my son needs in order to continue to develop and to thrive. That’s our overarching experience. He is now three years and seven months old. When you're born early, they use “corrected age” (based on the date you should have been born, so to speak, if you came to full term at 40 weeks) versus actual age for the first two years of life, because there is a developmental lag. The medical and school systems assume that by the time you are two years old, the child should have caught up, unless there's a major medical issue. Then after two years, you use only on the actual birthday so to speak. So he's actually three years and seven months from his day of birth.
Share the first part of R.'s story for readers on Sleuth! When and why did you start to feel concerned?
My son is almost two years old now. Last summer (when he was about 1 year old), he was sick for two or three weeks in a row. We weren't too concerned at the time, and then suddenly – well, it wasn’t sudden, but it seemed sudden – he lost 10% of his body weight within a month. He got to the point where he was so backed up, he wasn't eating anymore. I'm sure there were signs earlier that we didn't catch. For instance, he was not going to the bathroom regularly. And between me and my husband and our childcare, we never put that together. By the time we saw all the symptoms, he wasn't eating very much. And when he did, he’d throw up. Lots of throwing up. And he was in massive pain all the time. He was in such pain a few times that we had to go to Urgent Care. It was the worst. The scary thing was also that he just stopped all of the progression that he had been making. He had been cruising and starting to walk, and he just stopped everything. He wasn't talking yet, and he just became listless. It was terrifying. We never diagnosed why he lost all the weight. We found that there were a bunch of different issues, gastrointestinal issues. The weight came back first, but the bigger problem was that it took longer for him to get back to any physical and speech milestones. He started walking only once he had started on a new formula for a few months and gained weight. Now, we're actually seeing progression in his speech, which we haven't seen in the past. Up until he was well over 18 months old, he had no words that were consistent. I'm sure they’re supposed to have at least five to 10 words (or so) at that stage. That's when we went to a speech pathologist, and they acknowledged that he should have some consistent words. Recently, he's developed around 20 consistent words, and he's imitating, and you can just see him gaining confidence and gaining consistency. I'm feeling cautiously optimistic.
Share the first part of F.'s story for readers on Sleuth! When and why did you start to feel concerned?
My son started talking and walking at 10 months old. For all we could tell - and for all the doctors could tell - he was typical. You could ask him, “What does a cat say?” and he would answer. He would play peekaboo. He was engaged, and he had probably 30 words by the time he was 18 months old. I noticed at around that 15-month mark that he was not saying “Mama.” My husband said, “He's saying it. Do you hear him? He says, ‘Mom.’” I said, “I don’t think so.” That was the first thing that I questioned. He would say words, and then he would stop using them. Then, on top of that, he wouldn't eat very much variety. The doctors told me, “Oh, he's fine. Lots of kids are like that. As long as he's eating yogurt and those fruit pouches, he's fine. Don't worry about it.” So I didn't give it much thought. Then, at around 18 months, some of his words started changing. He went from saying “bite” to saying “bing,” and then he lost that word completely. I was pregnant with my second child at the time. F. was going to be 22 months old when I had my second one. At around the 20-month mark, he quit eating even more, dropped even more safe foods and then dropped even more words. By the time he was 22 months, right around the birth of my second child, he lost basically all of his words, and his level of social engagement dropped to very little. A friend of mine was getting married, so we traveled out of state from Georgia to Oklahoma to go to her wedding. That's when it was the worst. We realized just how far into himself he had gone. My family was there with us, and we all thought, “He's just not engaging at all.” He went through a regression, basically. In December, at the age of two, he wasn’t responding to us and there were no words at all.
Share the first part of baby boy's story for readers on Sleuth! When and why did you start to feel concerned?
I am a first-time mom. My son is 23 months old now. My son prefers to sleep on one side of his head, and when he was eight months old, he developed a lopsided head. We took him to a neurosurgeon - I believe that is the type of doctor that assessed him - and he was diagnosed with plagiocephaly. To reshape his head, he got a helmet that he had to wear 23 hours a day. He was wearing this thing, and it was hard for him to sit up. Every time he would sit up, he would fall backwards. He would bang it and I would hear him in the helmet when he was sleeping at night. Well, I don't know if it's because of a helmet, but he didn’t start walking until he was about 17 months old. Everything he did, he did really late. Initially, he qualified for Early Intervention because of his medical condition, and because he wasn't sitting up yet by himself or crawling. I thought the helmet was going to come off and he would be a typical, developing child. Unfortunately, it just took him a really long time. He did crawl, but he did it really late. He did sit up finally, but he was almost one. Then, I was concerned he wasn't walking. I had thought “Oh, well, it's okay. At 13 months, we'll do it.” Nope. 14 months. Nope. He was almost 17 months old when he started - that’s late! He’s still struggling with how he walks. He trips and falls a lot. He still has physical therapy. He walks like he doesn't have the muscles in his legs - like a penguin, that would be my interpretation. And he doesn't pay attention to where he walks. He doesn't look straight ahead. He's walking and he's looking over here, and I keep telling him “Look ahead! Look where you're going!” He bumps into the wall, and he'll trip and fall. It's like this catch 22. I am nervous about taking him out walking, because I feel like he's going to fall. But if I don't take him out walking, he doesn't get to practice the skill. And he's not talking. He's now at 23 months, and he has no words. He has a speech therapist that we do Skype with once a week. She gives us suggestions and advice on how to repeat (and repeat, and repeat) certain things. He says, “Mama”. He was saying “Papa,” but he stopped and that's where we are today. People tell me, “I wouldn't worry. My son didn't talk until he was three years old.” Or, “My son didn't talk until two and a half.” Things like that. I have a lot of friends with kids his age, and I’m on certain Facebook groups. We do video [chats], and I see how communicative their kids are. How they say, “Hi!” This one little girl said, “Happy birthday!” I have this hope that it's going to happen. But the reality is, nobody really knows if he's going to communicate or not. That's the biggest stressor for me. Not knowing.