Share the first part of K Bear's story for readers on Sleuth! When and why did you start to feel concerned?
When K Bear was 6 months old we took him to a Christmas party with lots of similar aged babies. They were all rolling and some were even trying to crawl. I felt alarm bells ringing but friends and family reassured me that boys take longer to develop and that K Bear was just lazy but we felt uneasy. We put the delayed development down to lack of sleep and almost zero time spend doing tummy time as he’d just scream. At his 9 month check-up, the paediatrician was concerned that he rarely rolled and still couldn’t sit unsupported. He recommended physiotherapy and reassured us K Bear would only need two or three sessions. Now looking back at photos before this check-up, K Bear was starting to sit unassisted but had slowly lost the ability in the run up to spasms starting. He’s also not smiling in most of the photos around that time which we now know are tell-tale signs of IS. A few days after this appointment K Bear made a strange movement, a little like he was losing his balance and putting his arms and legs out to steady himself. His arms and legs would fling outwards like he was falling forwards. He had an ear infection at the time so I thought it was due to that, however, I sent an email to the paediatrician describing the movement the best I could. He told me not to worry and that it sounded like a normal baby movement. A couple of weeks went by and K Bear was still doing this strange movement a few times a day. We had started referring to it as ‘jumping’ or ‘falling’. My father-in-law was very concerned when he saw it, but I told him the paediatrician said it was normal. He wasn’t convinced. We finally got footage of the spasms and sent it to the paediatrician on a Saturday, two and a half weeks after we first saw one. He replied later that day which we thought was strange as it was the weekend. He told us he’d forwarded it to a neurologist and the lump in our stomachs expanded. We were terrified.
Share the first part of RosieSue's story for readers on Sleuth! When and why did you start to feel concerned?
She couldn’t hold her head up till after a year old. She was very far behind her twin brother who was hitting milestones right on time or early. She was a floppy baby. She couldn’t coordinate suck swallow and breathe. She barely ever cried or made noise. Didn’t start babbling till over a year old.
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 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.