07/15/2018
How to Use Grassroots Efforts to Increase Awareness About Tongue Tie
Every single week, I meet parents who were wronged by doctors, lactation consultants, and hospitals about tongue tie. When I show them the baby's restricted tongue, many of them get very upset. And then they get very, very angry.
How will it change? Obviously, once doctors start learning more about it, tongue tie will be "accepted" as a real diagnosis. Until then, it seems like those who are getting involved do so only after one of their own children suffer from the problem. That will take too long to change things. So what is a parent to do?
I encourage parents to call or write to those who need help and explain the situation. But let's be practical here - what parent of a newborn has the time/energy to devote to that? Well, maybe a template would help. Below is an example, written by a patient of mine who went to extraordinary efforts to get help. In the letter, she balances and details her own experience, how she was failed, and how to change that without being rude or aggressive. Hopefully, it will serve as a way for some of you to hold those accountable whose naivete about the topic is harming dyads.
The letter:
Dear ________,
I came to you for breastfeeding help in late December of 2017. After only three days of trying to breastfeed my son, I knew something was wrong with his latch, I didn't feel like he was getting enough, and I started pumping. All I can remember about those first three days is that he would not stay awake at breast, his mouth did not open widely to latch, and the pain in my ni***es was excruciating. I pumped exclusively for one week and then came to you for help when my son was about ten days old. I received support mostly from ____ and also some from ____. I attended a handful of [education] sessions over a few weeks and ____ came to my house for a consultation once. My complaints were consistent: 1. Compressed ni***es after every feed, 2. Baby not opening his mouth very widely, 3. Falling asleep quickly at breast, 4. Colic, and 5. Breastfeeding agitation and aversion for me. At the fifth session, I was told that I had been over analyzing.
It wasn't surprising to hear the words, "over analyzing." I was desperate and in tears almost every time I visited _______. My son was always very relaxed after the drive there, so when I talked about his colic symptoms, ____ pointed out that he seemed relaxed. This happened a couple times. The dismissal of all our symptoms became so common that I started to feel like I was crazy for bringing them up. They weren't outright, verbal dismissals. It was gradually more of a lack of response, facial expressions, and vibes that I interpreted to mean my claims were imaginary or exaggerated. Although it was probably unintentional, this was gaslighting. So on the fifth visit when my son and I were both relaxed (he was asleep at breast like usual), ____'s remark, "I think now that you're not over analyzing . . .," confirmed that the vibe I felt was an accurate interpretation.
Unfortunately, I believed that I was over analyzing. I breastfed my son exclusively for one week after that while I neglected my instincts and repeated to myself that everything was fine and I was simply over analyzing. By the end of that week, my son couldn't stay awake long enough for a let down. I did not want to be told again that I was over analyzing because I couldn't keep ignoring the fact that something was wrong. Still wrong. Instead of going back to _____, I reached out one last time to my breastfeeding aversion support group on Facebook and told them my symptoms. Three women responded with information about tongue tie and Dr. Ghaheri. I flew my son to Portland at six weeks old for his first frenotomy. After months of chiro, daily mouth and body work, working through constant aversion, and a second revision in Oregon, we are finally exclusively breastfeeding for almost two months now. His tie and tension were so restrictive that he had to have a second frenotomy at five months.
I'm sharing this with you because I believe you truly want to help mothers be able to breastfeed their babies. Neglecting to at least suggest I have my son checked for tongue tie was definitely not helpful. Our symptoms obviously pointed to an oral restriction, so I don't understand why that was not addressed. While it's unfortunately common for professionals to chalk up my complaints to my anxiety, it is a huge disservice to ignore symptoms or assume a problem is all in a person's head. I was not over analyzing anything; I was simply compensating for the lack of information coming from an organization of authority I entrusted to help me feed my baby the best way I possibly could. My hope is that my case is uncommon in your history as an organization. I hope this is not how you typically deal with breastfeeding dyads because I can't think of a single excuse to justify the way we were handled at _____.
Dr. Ghaheri was also surprised when I told him that nobody at _____ questioned a tie. Needless to say, I stuck to video chats with an IBCLC in Oregon after the first revision. I had the financial means and tenacity to accomplish this, but most mothers do not. So I'm asking you to please refrain from telling mothers they're over analyzing. Please don't neglect the possibility of oral restrictions when the dyad has these abnormal symptoms. Tongue tie goes undiagnosed by pediatricians and unchecked by IBCLC's all over the world all the time. I've heard many stories from mothers who received no direction or acknowledgment about ties after seeking help from breastfeeding authorities. If the expert won't assess the problem when asked for help with breastfeeding, then they become the roadblock to breastfeeding, not the treatable restriction. The only ones who benefit from that are formula companies at a detriment to human health. I sincerely hope you will give much better support to other mothers and babies. They're counting on you to listen and use your knowledge to help them.
