During the assessment, the professional team members notice some soft neurological signs in Seiko’s development, such as an indwelling thumb, slight scissoring 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?