Persistence and Posterior Tongue Ties

“suck, suck, suck, click, click, suck, click.”

I was listening to my third child nurse during the first few days of life on the outside.  Amid the normal suckling sounds I’d grown accustomed to were clicking noises.  I was also experiencing pain, which I hadn’t had with my first two babies.  Providentially, a friend had recently been posting information on identifying posterior tongue ties, so I began to suspect this was the issue.  But I didn’t know what to do after that.  Where do I take him to have it revised?  How is it done?  I just didn’t know.

It was time for a check-up at the midwife’s office so they could do the heel prick on the baby. While there, I mentioned that I suspected he had a tongue tie.  However, the midwife couldn’t take care of that, and so told me to follow up with the pediatrician.

At the pediatrician’s office, I again brought up my concerns, concerns that had become more pressing as the clicking and pain continued, and as he was failing to gain weight.  She looked in his mouth, but assured me that he didn’t look tongue-tied.  That was when I learned that a lot of doctors are only familiar with the more classic anterior tongue-tie, and not the trickier posterior, or submucosal, tongue ties.

Frustrated, I phoned a lactation consultant recommended by my midwife.  The conversation went something like this:

“I think my son is tongue-tied.  He makes clicking noises, has constant hiccups, it’s hurting to nurse him, and he falls asleep at the breast all the time.  He isn’t gaining weight.”

“That does sound like he has a tongue tie. I really recommend Dr W. He even has an office close to where you live. Here’s his number.”

“Thank you!”

I felt so relieved to have someone validate my thoughts.  I’d felt like no one was listening or taking me seriously.  Of course, I immediately phoned the doctor she mentioned, only to experience another disappointment – he didn’t accept our insurance, and I wasn’t sure I could afford to pay out of pocket.  The receptionist was nice about it, and told me to try Nemours, a children’s hospital nearby that accepted almost all insurance types.

Disappointed but still determined, I immediately phoned Nemours.  I waited.  And waited.  On hold for what felt like forever.  Eventually, someone answered and said they could get us in that week, when my son was 12 days old.  Finally! I thought.  I felt that everything would be ok after that appointment, we just had to hold out for two more days.

The day came, and I asked my father to go with me since I wasn’t sure where the office was.  The appointment time required me to drive through rushhour traffic, with a delay from the train going through, in the rain.  In retrospect, maybe I should have seen all that as a sign that the appointment was not going to go well.  Instead, I was relieved to finally be there.  Until they weighed my son, and I saw that he had lost more weight.  I knew that the cut-off for him to regain his birth weight was fast approaching (they like for babies to regain by two weeks, and he had two days to go), so I was starting to panic.

I forced myself to calm down, though, as we waited for the doctor (who, coincidentally, had also been delayed by the train).  He asked what the problem was, and I explained that my son was tongue-tied, though I didn’t specify which kind of tie it was.  He then quickly put a gloved finger in the baby’s mouth for an exam, which lasted maybe two seconds.  He then turned to me and said, “Your son isn’t tongue-tied. There’s nothing I can do.”

My heart sank, and I fought back tears as I tried to talk to the doctor.  I asked about all his symptoms, and that he wasn’t gaining weight.  “Well, maybe you just have a low supply and should give him a bottle.”  I explained that I had successfully nursed two other children and had never had supply issues before.  That I’d never had a child not regain birth weight in under two weeks before.  That it hurt this time.  That I believed he had a posterior tie, as he had all the signs.  He dismissed all this, even dismissing the existence of posterior tongue ties.  The appointment ended with him telling me he could clip the tie under general anaesthesia, but with a child that young it was inadvisable.  I was so confused!  First, he told there was no tie, and that posterior ties didn’t even exist, laying all the blame on me and my body, and then implied there was a tie, but that he wouldn’t fix it.  He left while I could no longer hold back the tears, and a nurse looked at me pityingly.  I packed everything up and got in the car, but had to pull over to calm down and feed my son.

I had never felt so defeated.  At every turn it seemed that people either didn’t believe me or couldn’t help me.  In desperation, I called Dr W’s office again.  I’m fairly certain I was still crying as I told the receptionist I’d spoken to her a few days ago but that Nemours couldn’t help me.  Was there any way Dr W could help us, and that we could work out the payment somehow?  She told me to wait a moment while she spoke to him, and came back on the line, “Dr W says he can give you a discount if you can pay it up front.  Can you come in today?”  My parents offered to help with the cost if needed, and I was beginning to feel a bit of hope again.

My father again accompanied me to this appointment.  It was towards evening, and I’m sure we were all tired.  This office visit was immediately different from the experience at Nemours.  The doctor came in and asked some of the same questions the other doctor had, but Dr W seemed to genuinely care and listen.  He asked me to hold my baby a certain way so he could examine him better, and very quickly identified that my son had extensive submucosal and posterior ties.  He then told me he could take care of it right then and instructed me how to hold my son so he could numb the area, and then clip and cauterize the ties.  I had the option of letting the nurse hold my son instead, but I was happy to be able to hold him.  The procedure was over quickly, and he told me I could go ahead and nurse.

Even though he was still somewhat numb, I could tell an immediate improvement.  It wasn’t perfect, and it took time for him to learn to latch on properly.  I couldn’t express my gratitude enough, but Dr W was just happy to know it helped.

The next pediatrician appointment was in two days, and I was anxious to see improvement.  In those two days since the revision, he had gained enough weight to get above his birth weight!  I told our pediatrician that I’d had his tongue tie clipped, and it made all the difference.

There were still other, as-yet-unknown, medical issues to be addressed, but the immediate concern of him being failure-to-thrive was past. And though I didn’t know it, the lessons learned in those first two weeks – lessons about persistence and advocating for my children – would come to serve me well in the weeks, months, and years to come.


Dispelling the False Confidence of Ignorance

Like any other woman pregnant for the first time, I sought out all the information I could find. I signed up for the emails and read through all of “Emma’s Diary” (the booklet the midwives gave me at my booking in appointment) in only one or two sittings. I was in the UK at the time, though my friends in the US were similarly looking at and reading What to Expect and such. It’s a rite of passage, really.

Being from a family of old-school obstetricians, I didn’t know many, if any, who had had a completely natural birth. However, in the confidence of ignorance, I felt that the childbirth classes, websites, and books provided me with all the information I required.  Unfortunately for me, and many others, those sources didn’t give me the information I really needed.  Instead, when labor came, I felt completely unprepared and confused when my body didn’t respond the way all those resources said it would. Instead, I felt defeated, no longer confident, and ended up with a more traumatic birth experience (but that story is for another day).

It wasn’t until over a year later, when I was pregnant for the second time, that I found a book that helped me make sense of my first labor and process that so that I was able to go through it again with less anxiety. I was sitting with my sister-in-law, actually, and saw The Bradley Book on a coffee table.

Intrigued, I picked it up, and then found I couldn’t put it down. Suddenly my first labor made sense! I knew at that point that my body hadn’t failed me, that I wasn’t somehow different from every other woman out there, just that our bodies go through the stages of labor in varying ways. It was such an eye-opening and even freeing experience to read a book that seemed to perfectly describe my own experiences. Now I recommend it to anyone who is pregnant, because of the impact it had on me.

The Bradley Book may not have made the pain of labor less, but knowing how my body worked, and knowing more of what to expect relaxed me so that it was a much better birth. Thanks to that book, and conversations with friends about their own experiences, I knew which positions might be better for me, what my various emotions during labor meant about my progress. Actually, reading that book did lessen my pain, by replacing the anxiety that came from the false confidence of ignorance with the true confidence of knowing that my body wasn’t broken. And that is priceless.

The Journey Begins

Thanks for joining me!

In 2007 I was pregnant for the first time and had no clue what twists and turns life would bring.  I’d never even heard of birth trauma, tongue tie, mastitis, cyclic vomiting syndrome, neonatal gallstones, femoral anteversion, hyperemesis gravidarum, or nightshades. I never knew I’d spend countless hours poring over medical studies as I tried to learn about my children’s medical conditions and get them the treatment needed. At one point we were at the ER or a specialist’s office so frequently that I jokingly coined our family motto: “Today is not a good day for the emergency room.”

I’m on my fifth pregnancy now, and still learning and wondering what the future holds. Now, though, I feel much more prepared to handle whatever comes up, since I now know how to navigate the system. This blog is to share our inconvenient adventures, both past and present.

“I’m going on an adventure!” – Bilbo Baggins20171124_191345707_iOS