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.
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 S.'s story for readers on Sleuth! When and why did you start to feel concerned?
Our son (nicknamed S.) is an interesting case. If you were to ever see him, you might think he was two years old, not his actual age of three-and-a-half. Not only does he model some immature behaviors, though he's well-behaved, but he's very small for his age. He wears size-two clothes still. He is getting a little taller, and he eats like a horse. But he just stays very thin. He’s not even 30 pounds. He has a little sister who is 10 months old who is catching up to him in weight. She's close to 20 pounds. She’s right around the 50th percentile for everything. He's still around 4%. On his growth chart, he has been less than the 5th percentile his whole life. And then speech-wise, he's actually more like a nine month old (not a three-and-a-half year old). For whatever reason, again, we can't figure it out. His expressive delay is huge and he does not talk. I would say that what he understands is a lot closer to a match for his physical size (of 2 years old). If we say “Hey, slow down,” if we're outside walking around, and he gets a little too far ahead, he'll slow down. If we say, “Okay, we're about to cross the street. We’ve got to hold hands,” he puts his hands up. He knows we're going to cross. If I say, “Alright, you’ve got to sit down in your chair.” Then, instead of standing up, he sits down. But he can’t talk. He's so small physically, and that has got to be holding him back in some way. I'm probably wrong, but I feel like that in my heart. Our son was born with a couple of strikes against him. His mother had a two-vessel cord during the pregnancy . He was basically always very, very tiny, through the entire process. To the point where we even got geneticists involved. And they were telling us it could be some kind of skeletal dysplasia. It could be this. It could be that. They were telling us a number of things that it could possibly be. When S. was born, he was supposed to go naturally. We ended up trying to induce early. I think it was three-and-a-half weeks early. That didn't work, so they did a caesarean. When we went home from the hospital, he was actually below five pounds. Then, right away, he had an inguinal hernia, so he went through surgery. As well as that, he had digestive issues. He was allergic to milk. It took us a little while to figure out what was going on. As he grew, we noticed that he wasn't hitting a lot of his milestones, whether it was movement, or speech, or others. He finally started crawling around a year old but he was not very good at it. And he didn't walk independently until he was just about two. We started to notice when he wasn't developing language. He also has a little bit of a lazy eye, which I think is genetic. I had the same thing when I was a child. These were all little things that we knew were somehow contributing to what was happening. Those were our first indications when we started to put together these puzzle pieces.
Share the first part of M.'s story for readers on Sleuth! When and why did you start to feel concerned?
In utero, we already had a few challenges that came up. We found out about clubfoot at one of the early scans. It was a non-issue really, in the scheme of things. When M. was born, he had left clubfoot and torticollis. Those were the only issues of note. We started seeing a physical therapist right away for torticollis at the Hospital for Special Surgery in New York City. My dad, who is a retired physician, noticed that M.’s eyes were non-reactive to light at about three months old. (It wasn't the pediatrician who noticed. It was my dad.) That is where I would say our journey really began. Then, one by one, other issues started to crop up over the years. For his vision, we saw an ophthalmologist. We went to one ophthalmologist when he was still three months old. This is one of those stories: The doctor was like, “Well, he could be blind.” We thought, “What? What are you saying to us?” So that guy was out. We switched to another doctor. And actually, M.’s eyes just kind of caught up to other kids. He was diagnosed with cortical visual impairment years later, and he wears glasses, but his eyes did catch up to a degree. Some of my friends have a similar story, too. You end up seeing a lot of different physicians to get all the information you need. But after this, M. wasn't really meeting the expected milestones. We had gotten into Early Intervention early. He must have been six months old. He needed physical therapy because he wasn’t rolling over and the torticollis was unresolved. Then, at 12 months, M. wasn't really verbalizing at all. I think one of the main reasons M. was given an autism diagnosis early on was because of his visual impairments. It's the way he used vision: when he's thinking, he looks someplace else. When he's walking, he doesn't look and instead he uses his feet to feel. He wasn't he wasn't making eye contact when you were talking to him, and then he also wasn't speaking. The autism diagnosis is definitely not correct. It helped us get therapy early on, but it also was not accurate. Later on, that diagnosis also didn’t help get other kinds of support. I always knew it wasn't autism because of his social engagement. M. was always so sweet and engaging. He was also given a diagnosis of PDD-NOS (Pervasive Development Disorder - Not Otherwise Specified). I don't think they give it anymore. It was a catch all: “We don't know what's happening here, so we’ve got to give you something.”
torticollis observed at 0 years & 0 months
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.