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Why Didn’t Our Pediatrician Catch This Earlier??

During the assessment, the professional team members notice some soft neurological signs in Seiko’s development, such as an indwelling thumb, slight shutterstock_194039927scissoring of her legs, and low muscle tone in her trunk. Seiko was referred to early intervention by her pediatrician because she is 14 months old and not yet sitting or crawling. According to her parents, the pediatrician told them that Seiko was delayed because she was born early but that she’ll probably catch up. As the professional team members talk to the parents about the assessment findings, you can tell that they are trying to be gentle with describing the significant concerns they see. The parents look rather stunned and ask you a tough question: “Why didn’t our pediatrician catch these signs earlier?”

What Do You Do?

What a difficult situation to be in. Have you been there? Imagine being the parents, hearing these findings from relative strangers who have just met their daughter for the first time. These findings, which can sounds pretty frightening or confusing, understandably make them wonder why the pediatrician they trust never brought this up. Before jumping to conclusions about the pediatrician, consider these two questions:

Do the parents always see the same pediatrician, or do their well-child and sick visits rotate through whichever doctor or nurse practitioner is available?

Do the parents routinely take their daughter to the doctor? How long has it been since the child has been seen by the pediatrician?

If the child isn’t seen regularly or has seen different doctors for brief visits, it’s possible that these signs were missed. Possible, but not necessarily the only explanation.

Answering the Tough Question in the Moment

You might not know all of these answers, and you certainly don’t want to answer their question by immediately asking more questions. You do, however, need to address the elephant in the room and provide some guidance. First, it’s okay to be honest and admit that you don’t know why the doctor hadn’t addressed these signs before but that he referred them to early intervention which is a good start. You can assure the family that you will help them communicate with their pediatrician by sharing a copy of the IFSP (with their permission) and making a phone call to discuss the findings in detail if that’s helpful. You can also discuss an additional referral to a specialist, such as a neurologist or developmental pediatrician, who can provide another opinion. Always ask the parents if they have any questions and how you can help before you jump in and make calls or referrals.

After you’ve provided some reassurance, I think asking a few more investigative questions can be very appropriate to help you problem-solve those next steps together, such as:

Have they noticed these signs before? – If not, I’d wonder if these signs represent a new problem. Or maybe they’ve always been there but the parents didn’t know that they were red flags, which is okay. These things aren’t always easy to notice when you don’t know to look for them.

What has the pediatrician said about Seiko’s legs, hand, or muscle tone? – It’s quite possible that the doctor mentioned these signs and that he has been monitoring them. It’s possible that a “wait and see” approach is at play here. (I know this makes us early interventionists cringe but it does happen.)

Has the doctor ever mentioned seeing a specialist? – It’s possible that a referral was suggested or made to the neurologist but the family wasn’t ready to see the specialist, preferred to wait, or didn’t understand why it was suggested so didn’t keep the appointment.

There are many possibilities in this scenario so be careful what you assume. It is absolutely possible that the doctor missed these signs, but it’s also possible that there’s more to the story. Regardless of the reason for why Seiko is 14 months old with possible signs of cerebral palsy, the most important thing now is to help the family find the resources they need to support her development. When the family is ready, the team should proceed with writing a meaningful IFSP, initiating services as soon as possible, and connecting the family with an additional referral to help them find answers.

How have you handled this situation? What words would you use to preserve the pediatrician-parent relationship?

If the parents consent, how would you handle communication with the pediatrician after the assessment?

 

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2 Comments to “Why Didn’t Our Pediatrician Catch This Earlier??”

  1. This happens a great deal in the large, very rural area I work in. We have a few pediatricians in the are, but not enough to see all of the children and specialists are a three-hour drive.

    Usually I don’t follow up on issues that the parent doesn’t bring to the discussion (that I am concerned about) until we have a little trust in our relationship.

    I catch lots of things the parents say the MD didn’t, esp. around feeding safety. I typically respond that the MD gets about 15 minutes with the client about every 6-months or when the priority is on a specific illness. On the other hand, I may see the client for 60-minutes 20 to 24 times in 6-months. My approach is dependent on the parent’s comfort with medical vocabulary and in “telling” an MD something.

    Part of what I do is help the parent notice anomalies and help them learn the vocabulary. The parents sometimes don’t fully comprehend what the MD says.

    I could also submit a report of my observations for MDs that have such a preference, but I prefer the parents learn to feel comfortable sharing their concerns for their child directly with all professionals. This is inline with the goal of supporting parents to become the primary interventionist and advocate for their child.

    My hope my approach is sensitive to the parent’s comfort with medical vocabulary and in “telling” an MD something.

    • This is a very effective way to deal with this problem, Janet. I like your approach to helping families learn the vocabulary so that they can discuss their concerns and observations with their doctor. It makes such a big difference to be able to speak (and understand) the same language. I once heard a nurse practitioner say that it can be challenging to diagnose something (like autism in this case) when she just sees a child for 10 min and usually at a sick visit. Another physician said that some diagnoses are best made across time so it’s okay to do some waiting. It’s a tricky line to walk, though, to wait long enough but not too long. I think the best approach is to build that partnership with physicians and support families using the strategies you describe.

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