Musings of a Marfan Mom

Speech Delays & Marfan Syndrome

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I’m going to start this post with my usual disclaimer: I’m not a doctor so please don’t take anything I write here as medical advice.

You won’t find much of a connection between speech/language delays and Marfan syndrome in the literature. A quick search on PubMed turned up 0 papers, and checking Google scholar found me a 1997 paper that found no link and a 2004 that found a possible link, but that was looking at patients with joint hypermobility syndrome, not Marfan.

However, I’d like to argue that there is a link in delays, but not in disorders. First, I’ll explain the difference between the two. A delay is a normal pattern of development that is happening at a slower than normal pace. A disorder is when the pattern of development is abnormal. Make sense?

Baby J was 7 months old at the NMF conference this summer, but not yet babbling. Since he was fortunate enough to have a clinic appointment with a member of the Professional Advisory Board, I thought I’d ask the doctor if there might be any sort of connection. At first he said no, which is what I had expected. Then he thought a moment and said “well, Marfan does cause low muscle tone, so I suppose if a child had low oral tone there might be a speech delay.”

And that makes a lot of sense. If your muscles are weak everywhere else, they’re probably going to be weak in your mouth/jaw as well. That makes it more difficult to complete the tasks that set the stage for speech, like sucking and chewing, let alone form the sounds for pre-speech. We know that this is definitely an issue for Baby J, and his OT gave us a little tool to work on strengthening his lips and jaw.

I don’t think low oral tone is the only thing to it though. We know gross and fine motor delays are very common in kids with Marfan syndrome. J didn’t sit up or roll over till 8 months, didn’t crawl till 10 months. With both of my sons being in our state’s early intervention program, we’ve learned a bit about child development. Development happens in spurts and stages, but still a more or less linear fashion. A typical baby will probably roll before babbling, and babble before crawling, for example. Because of J’s delays (which are not uncommon delays in Marfan), he is spending all his energy catching up on motor skills that he should have mastered awhile ago. This doesn’t leave him time/energy to work on the skills he should be mastering right now. At almost 13 months, J should be speaking his first word soon, or at least doing a good deal of babbling with different sounds. Instead, he has just started saying “ba, da, ma, & ya” and doesn’t yet mimic other people’s sounds. Multiple therapists have told us that his speech delays are in part a result of his motor delays.

The more parents of kids with Marfan that I meet, the more I’m hearing about speech delays. It seems really logical to me that a combination of low oral tone and motor delays are to blame, and you can see how these are related to Marfan. Are speech delays a diagnostic criteria of Marfan? No. They are not “part of” Marfan like aortic aneurysms, scoliosis, and detached retinas are. It’s my belief though, that speech delays are something to add to the list of “things that are indirectly caused by Marfan.”

I could probably write a whole post on why we’re not seeing literature on all these things related to Marfan, but it comes down to this. Research funding is hard to come by. We haven’t cured the life-threatening aspect of this disorder yet. So, I think until we do, the bulk of research is going to focus on quantity of life vs quality of life. That doesn’t mean those connections don’t exist, just that no one is getting paid to record them.

If you suspect that your child may have a speech (or any other kind of) delay, consider getting him/her evaluated for services. If you’re in the US and your child is under the age of 3, you can get a free evaluation and free services from your state’s early intervention office. [In California that is Early Start.] If your child is 3 or older, your school district can provide a free evaluation and services.

The opinions offered at Musings of a Marfan Mom are for informational purposes only and are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding Marfan syndrome and any medical condition. Never disregard professional medical advice or delay in seeking care because of something you have read here.

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8 Comments

  1. What you are saying makes total sense. I didn’t really start talking until age 3. My parents just figured I was just stubborn. My youngest was delayed & needed speech therapy & we just presumed it was due to her prematurity… Hmm…

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  2. Makes complete sense to me. Our kids have EDS and our oldest was speech delayed. The younger two struggle with making certain letter sounds. The oldest was in a tutoring program that focused on the muscles used to make phonetic sounds so we realize just how difficult that can be for a child. Thanks for putting the information out there.

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  3. Another possible connection is the high arch pallet. I had an AMAZING vocabulary at 3 but I couldn’t get the words out. It took years of speach therapy to even get me understandable like alot. I remember clearly when I was 7 realizing OH the speach therapist thought my mouth was different then it was and putting my tongue on the back of my teeth instead of the roof of the mouth like she was trying to teach me to. Once I realized my mouth was different and took to practicing the ways I figured out to make the sound I was able to start speaking much more clearly. For years though my mom had to play translator cause people thought I was “lazy” and not trying to make the sounds right. But I remember that struggle to talk clearly.

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    marfmom Reply:

    Such a good point! Totally forgot to mention that one. Also makes nursing a baby a real pain…took J 5 weeks to figure out how to latch correctly and it’s still a little off.

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  4. J was delayed too. He spoke about 3-4 words around a year old, but the real speech didn’t start coming until after he turned 2. A friend in the early intervention program met with me for lunch when J was about 18 months or so and said he wouldn’t qualify for services since everything else about his language and cognition were on target- he didn’t have the 25% delay needed to get services. I was anxious for awhile about when he would ever talk. Now of course he doesn’t stop. He does still have a frontal lisp though and we are keeping an eye on that.

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  5. in his inner ear, which could only be detecting with ultra sound. It was distorting his hearing and slowing his speech. I just wanted to point this out, so not everyone assumes that Marfan’s is the only possible cause of a delay. After getting tubes in his ears (twice now), my son caught up and at 3 1/2 is above average verbally.

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  6. It looks like half my post is missing- in brief my son (who has Marfan’s) was verbally delayed and had Early Intervention. It turned out to be caused by fluid in his inner ears.

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  7. My youngest has been slow to do everything (crawl, walk, babble, talk, etc). It took us two meetings for speech evaluation to get her qualified (we initially had her looked at around 3, but it took until 4 for her to be far enough behind for help from the school system). I thought I would just toss on here that I would encourage any parent who is concerned about speech to push for reevaluation if initially turned down for help. Our daughter (who will be 5 this month) has made so much progress working with the speech teachers and OT. I wish I would have acted sooner and paid for the private speech and OT. Glad to see I’m not the only one who suspects a connection between these delays and marfan syndrome! My son(age 7) never had any of these early issues, but is now struggling with writing and low muscle tone in his upper body.

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