Tongue-Tie – Bill of Rights & Responsibilities

Tongue-Tie & Lip-Tie “Bill of Rights & Responsibilities”

As a parent, we have rights and responsibilities when collaborating with our medical or health care support.  We are partners or equals on a team in caring for our children.  Something many of us are aware of is the “Patient Bill of Rights & Responsibilities”.

I thought I’d spell some of those out in the discussion of tongue-tie and lip-tie.  The idea is one of having integrity and working together.  Our doctors may or may not be informed on breastfeeding issues or on tongue and lip-tie, but most of them are caring individuals who have our interests at heart too.  Seeing our healthcare as a team is important.  If the doctor doesn’t see you as the parent or guardian as part of the team, it may be time to find a new team.

Here are some of my ideas on rights and responsibilities.  What would you add?

Rights:

  • You have a right to ask your health-care team about their training on tongue and lip tie.  You can ask what they learned about TT/LT in school or what courses they have taken since on the topic.
  • You have a right to ask for information.  You can ask them where they formed their ideas on treating or not treating and what studies they can share with you.
  • You have a right to ask for options of procedures.  When you know that anesthesia doesn’t need to be used for most tongue or lip-tie releases, you have a right to ask for it to be done in the most current way.
  • You have a right to disagree with your doctor in a respectful way and to inform them of information you have learned about tongue and lip-tie so that their next patients are helped sooner.
  • You have a right to shop around for an INFORMED doctor, pediatrician, IBCLC, dentist or Speech Language Pathologist to access the care your baby needs.
  • You have a right to take part in treatment decisions and to find doctors who will discuss pros and cons of revision now or later.
  • You have a right to respect and not to be discriminated against.  It should not matter if you are a “new” parent, a teen-mom, poor or wealthy or a dad for that matter!
  • You have the right to utilize an interdisciplinary team.  You can go to a dentist, an IBCLC, a chiropractor and a WIC counselor all for the SAME reason for different parts of the journey… a pediatrician may diagnose, an International Board Certified Lactation Consultant  may help with suck training or latching, the dentist can release the tongue and revise the lip-tie, the counselor can “have your back” and the chiropractor can give bodywork for lasting impact on the whole body.
  • You have the right to confidentiality between those providers.  They must each keep your privacy and confidence.
  • You have the right to access of care, no matter your financial standing. Your baby shouldn’t have to miss out on care because of money or insurance but it will make it more challenging to find a practitioner.

Responsibilities:

  • You have the responsibility to talk to your health care team openly and honestly regarding all symptoms and medications you are working with for you and your baby.
  • You have the responsibility to ask the questions when you don’t understand anything discussed.  You should leave with clear comprehension or call back if you are not sure.
  • You have the responsibility to inform yourself about your child’s health. Ignorance is not bliss when it comes to all things parenting.  Read as much as you can on the topic, watch videos, discuss with an IBCLC or La Leche League Leader and don’t forget your family and friends as resources.  And remember to ask them how much education they have on the topic!
  • You have the responsibility to show up at agreed upon times and be cooperative (or helpful) with treatment if needed.  You may be asked to help position your child or keep your child calm for example.
  • You have the responsibility to follow-up with after care.  If you are giving any follow-up care, ask questions and discuss what you are comfortable doing or not doing.  If you aren’t comfortable with some “stretches”, ask about alternatives and remember BREASTFEEDING is the ultimate “physical therapy” there is for a child!
  • You have the responsibility to take the best care you can of yourself and your child.  You should be committed to long-term positive health choices for your family…in this case, keeping up with dental hygiene, keeping up with physical therapy or any other prescribed treatments.
  • You have the responsibility to participate in medical education.  You can pass on your knowledge, your before/after pictures, your story to other families and other doctors.  You can inform those you went to earlier who didn’t have the answers you now have and update their knowledge as well.
  • You have the responsibility to pay your bills as you can.  This may mean creating a payment plan or asking about sliding scale fees.

I hope this gives a foundation for further dialog with your doctor and team and helps you work out the best support for your baby when it comes to revision of tongue and lip-tie.

Advertisements
This entry was posted in Biting, Bottles, Breastfeeding, IBCLC, medical advice, Medications, Milk Supply, tongue-tie, Weaning. Bookmark the permalink.

9 Responses to Tongue-Tie – Bill of Rights & Responsibilities

  1. Jaye Simpson says:

    You state in your article that: “…an International Board Certified Lactation Consultant can diagnose,…” Actually NO we cannot diagnose. We can provide observations, do suck assessments , ROM evaluations, etc and provide parents with evidence based research, education, articles, and further information for them to take to their provider for actual ‘diagnosis’. We can refer directly to a specialist who we trust and know CAN make the appropriate diagnosis. We can empower the parent to advocate for themselves and their child. But we CANNOT Diagnose. Unless an IBCLC is also an MD (in the USA) we cannot ‘diagnose – to do so violates our agreement with IBLCE and our Code of Professional Conduct, the Scope of Practice and the Clinical Competencies.

    Warmly,
    Jaye SImpson, CLE, IBCLC, RLC, CIIM, BT, BC

  2. Jaye Simpson says:

    The rest of your article however is excellent! 🙂

  3. naomia2z says:

    Thank you Jaye for the clarification. I really thought that when an IBCLC saw a mom they could diagnose mastitis, inverted nipples and so forth. I will make that change!

  4. naomia2z says:

    HOW IS THIS?
    You have the right to utilize an interdisciplinary team. You can go to a dentist, an IBCLC, a chiropractor and a WIC counselor all for the SAME reason for different parts of the journey… a pediatrician may diagnose, an International Board Certified Lactation Consultant may help with suck training or latching, the dentist can release the tongue and revise the lip-tie, the counselor can “have your back” and the chiropractor can give bodywork for lasting impact on the whole body.

    • Jaye Simpson says:

      Beautiful! Thank you!

      We can make observations – many observations! We can and should evaluate for tongue tie and other issues (such as tight muscles) but we cannot technically say “Your baby HAS…” We are limited to “It appears that your baby may have…based on these observations and evaluations.” Yes it is semantics, but we must be careful not to violate our CPC and SOP… Same thing with Mastitis and yeast, and the like…”It appears, based on your symptoms, you likely have such and so forth.” We can give suggestions for treatments but cannot ‘prescribe’ a treatment. We can say “Many moms have found, or suggested treatment for this issue is…” But we cannot say, “Take this pill and do this ‘thing’…” as a prescriptive treatment. We must be very careful. And we must always provide references to back up our suggestions if asked. We must not ‘play around’ with moms and babies by guessing – and we must always know when to refer out to the HCP or Ped. 🙂

  5. cradlehold says:

    I did not see what you wrote before but I like what you have now. Thank you Jaye Simpson IBCLC for pointing out that difference. IBCLCs are part of an integral and essential team but as we all know only doctors have the training and expertise to make an actual diagnosis. Well done.

  6. Having worked on the New York Lactation Consultant Association Bill of Rights and Responsibilities for Clients Seeking a Lactation Consultant, I like this approach.

  7. My daughter’s tongue-tie was diagnosed by an LC, who was also a friend. If it hadn’t been for her, I may not have been able to nurse this baby (my third) at all. The hospital staff LC and pediatrician both said there was nothing wrong with my daughter’s tongue. But I knew something was wrong (excruciating pain for me from first latch), and so did my friend and her partner, both very experienced LCs. They referred me to an oral surgeon who fixed the tongue tie (which was very severe, but atypical presentation–no heart-shaped tongue). I didn’t tell my pediatrician until the procedure was over! I was afraid she would disagree and /or try to dissuade me. But in the end she was supportive.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s