My sensory story: Part 1
I remember the exact day I learned that I wasn’t given all of the information.
It was just after my son’s 4th birthday. He had been evaluated for OT after his third birthday, but that was cut short by Covid, and we decided to start again with a different therapist. One that was on her own in a private practice, one that seemed more holistic and focused on the individual child rather than the systems implemented in the larger practice we had come from.
When she was doing her evaluation write up, she texted me to ask me if my son had had any interventions in the NICU after his premature birth, or if he was simply there to grow a bit and meet gestation requirements (babies can’t leave the NICU until they reach 35 weeks, he was 34 and 1 day). I told her that honestly, I didn’t remember all the details because I was in bed recovering and he was in the NICU, and my husband may have more information, but I know there were breathing tubes, IV for feeding and antibiotics since I was too early for my strep b test, and definitely blue light therapy for jaundice at some point. And then I sent her this picture of him on day one.
She was shocked. She actually called me to make sure I hadn’t filled out my paperwork wrong. She said “when you wrote 34 weeks 1 day on his paperwork, and then sent me this picture, I assumed maybe you meant 24 weeks, or 30 weeks, or you just wrote it wrong. When I initially read your paperwork, I assumed he spent some time in the NICU to grow and that was it. But this is a lot of intervention.
Her next question was “what supports did they send you home with and recommend? What early intervention did he receive?”
My answer: nothing?
Well that’s not entirely true. They did tell us that babies who had been on oxygen are at a higher risk of going blind (did you watch This is Us?), and that we should get his eyes checked. And then they sent us on our way.
Fast forward to today and I know that premature babies are at a higher risk for:
Sensory Processing Disorder
ADHD
Learning disabilities such as dyslexia
These three are things that my son has either been diagnosed with (SPD/ADHD) OR I suspect he may have and will be evaluating soon (Dyslexia) - his school IEP eval “diagnosed” him with “specific learning disability in reading”. This is school lingo based on what types of things would qualify him for an IEP according to the IDEA (Individuals with disabilities education act). A school cannot diagnose dyslexia but to oversimplify it Dyslexia is just that - a learning disability in reading.
But there’s a long list of other diagnoses that premature babies are at risk for.
Asthma (my son actually has mild asthma that he probably grew out of, but no one thought to mention that his underdeveloped lungs at birth could contribute to this until he was 3 and I asked multiple doctors why he was coughing for months after a minor cold. I remembered that they told me they’d give me two steroid shots 24 hours apart to grow his lungs during my labor, but he was born 10 hours later so we never got the second shot. Only after bringing this up did my doctor send me to a pulmonologist.).
Visual and hearing impairment - we’ve tested both of these. His vision is okay, he might need glasses soon but that’s likely due to genetics since his mom is basically blind. His hearing test came back with processing issues but no hearing issues.
Intellectual disabilities - specifically, we don’t have this, but I think learning disabilities may fall into this category. I’m not sure.
Heart disease, hypertension, diabetes later in life - hopefully this won’t be a thing.
Autism - he’s been tested for Autism with a resounding “definitely not”. I’ve recently come across a specific profile of Autism (PDA) that I actually do think sounds a lot like him, so I’m just trying to learn more about it right now, but I don’t believe he has “traditional” Autism.
Increased risk of SIDS - thank god, we have a big physically healthy 7 year old.
And the list goes on. I couldn’t possibly list all of the things that preterm babies are at risk for, and so much is probably still unknown.
Here's the thing. My guy was at the tail end of prematurity, close to full term and considered “late preterm”. And he was BIG. At 5 lb 4 oz he was not only the biggest in the NICU, he was big enough that if it weren’t for other issues and that gestational age rule, he could’ve gone home (5 lbs is another requirement).
But he was still premature. That alone is a risk factor regardless of all of the other hospital interventions he needed. According to the University of Kentucky healthcare, “Babies born only a few weeks early (late preterm, 34-36 weeks) often have long-term difficulties such as:
Behavioral and social-emotional problems
Learning difficulties
Increased risk of conditions such as Attention Deficit-Hyperactivity Disorder (ADHD)
Increased risk for Sudden Infant Death Syndrome (SIDS)”
Why didn’t anyone tell me this? At the VERY least, an increased risk of SIDS should’ve been discussed at our discharge. But these other risks, all of which my guy seems to have presented, were never mentioned. Early intervention was never mentioned.
And I don’t know why. I’ll probably never know why. All I can do is share so other people know, and continue to support my child and advocate for my child.
Look out for part two when I share my story about how I knew something was wrong and what signs we saw.