My name is Jen, and I live in the Orlando area. My son (known here as Sprout) has a posterior tongue tie, and it's still painful to breastfeed him at 5 months old. I spent the first 4 months of his life trying to figure out what was wrong and how to get it fixed, but I couldn't put together the patchwork of resources fast enough to make a difference. I'm hoping that by spreading our story and the names of the people who helped us along the way, I can make the path a bit easier for the next mom who comes along.

Sunday, August 29, 2010

Our story

I breastfed my daughter for nearly 2 years. We had difficulty the first 4 weeks but we worked through and had a great breastfeeding relationship after that. I expected breastfeeding my son to come easily.

Sprout was born in a fabulous homebirth with Robyn Mattox. During her newborn exam, Robyn noted that Sprout might have a slight tongue tie. But he latched on and began to breastfeed seemingly normally.

Eight hours after he was born, we noticed Sprout was breathing rapidly. We transferred to the hospital and began a (ultimately unnecessary) 3 day NICU stay. During this time my milk came in and breastfeeding was somewhat painful; I barely noticed through the haze of post-birth hormones, sleep deprivation, and the stress of the NICU stay.

Once we were home and settled, it became clear that something wasn't right with Sprout's breastfeeding. I was in significant pain, my nipples were a mess, and Sprout couldn't stay latched on for more than a couple sucks at a time. He would click off every suck or two, requiring me to re-latch him. Sometimes he would slip off and pull himself back on, tearing up my nipples in the process.

At just a week or two old, I saw a lactation consultant, P.L. She gave me positioning tips and I went home to try to make it work. Things didn't improve, and I went back to P.L. She then said it was likely a forceful let-down that Sprout couldn't handle; I didn't feel that was the case and pushed that I felt something was not right in his technique. P.L. referred me to the Beckman Oral-Motor Clinic.

(Note: even though Sprout kept popping on and off the nipple and feeds lasted just a few minutes, he was gaining weight appropriately thanks to my strong supply and his amazing efficiency at nursing. However, in addition to my pain, his inability to maintain the latch was leading to him taking in large amounts of air, which exacerbated his reflux.)

We were seen at the Beckman clinic when Sprout was 3 weeks old. A young tech did the exam and declared Sprout to have muscle weakness in his tongue, cheeks, and lips. She gave me various exercises to do for a number of weeks. For the first time I specifically asked about tongue tie, because my research had found that the symptoms of a tie were exactly what we were experiencing. The tech said she didn't feel he had a tongue tie. I did the exercises for a week and saw no improvement.

(Note: there are two types of tongue tie. The one you probably think of, when the tongue is connected to the bottom of the mouth all the way to the tip, is an anterior tongue tie. A posterior tongue tie is tied further back, where it's difficult to see and diagnose. A tie restricts the movement of the tongue and makes breastfeeding difficult and painful; posterior ties restrict the motion of the middle and back of the tongue, essential to the tongue's wave action and suction. Back in the day, when everyone breastfed, tongue ties were cut by midwives as soon as they were noticed. When the country moved to so much bottle feeding, doctors stopped clipping tongue ties. It's only very recently that there has been a resurgence of evidence that tongue clipping is a quick, easy way to improve a breastfeeding relationship that's failing because of a tie.)

The date of the first local LLL meeting after Sprout was born finally rolled around, when he was 1 month old. Unfortunately, I got no help there; the meeting was disorganized and the leader focused on the one pregnant woman instead of the two of us with babies and latch issues. I called another leader of that LLL group who I'd met in the past; we spoke on the phone and she promised to ask around for local tongue tie resources. I never heard from her again.

By this time, all of my research had convinced me that Sprout was tongue tied. I spoke with our wonderful pediatrician, Dr. Otero, and got a referral to two different ENT doctors. One, Dr. Mokris of the Florida Otolaryngology Group, was able to see us quickly (within a week or two); the other, Dr. Kosko of CENTA, didn't have an appointment available for 6 weeks.

We saw Dr. Mokris (both an adult and pediatric ENT) and got no help. He quickly looked in Sprout's mouth and barely glanced at the information sheets about posterior tongue tie that I'd brought along. He said that Sprout wasn't tied and that he didn't believe in posterior tongue tie, anyway. He also said he that he rarely even clipped anterior tongue ties, that they didn't affect breastfeeding. He suggested that I pump and bottle feed Sprout until his tongue got stronger (???).

While waiting for my appointment with Dr. Kosko, I found that Florida Hospital holds a free infant feeding clinic where you can meet with a therapist. The therapist checked Sprout's suck and tongue briefly and found no tie. She believed that his latch-dropping (suck-drop, suck-drop, suck-suck-drop) was a habit formed during his first few days of life when his breathing was rapid and he couldn't suck-swallow-breathe. After speaking with her, I spent 24 hours trying to "retrain" Sprout by removing him from the nipple for 10 seconds every time he dropped the latch. This had no effect.

During this time, I had been calling CENTA, trying to grab a cancellation and get seen sooner. Finally, I was able to get an earlier appointment with Dr. Kosko.

Days before the appointment, I went to a new moms meeting at South Lake Hospital. It's hosted by a lactation consultant, Amy Harvick (IBCLC), who gives one-on-one feeding assistance to the moms while they socialize. Amy was the first to spend quite a bit of time feeling Sprout's latch and suck and examining his tongue. She noticed that it was tight under his tongue and that the motion and suck were restricted. She wrote and faxed a letter to Dr. Kosko with her findings, emphasizing that treatment of tongue tie was very effective for breastfeeding moms and babies.

Finally, we were seen by Dr. Kosko, a true pediatric ENT. He was the first doctor to take a serious look in Sprout's mouth -- he papoosed Sprout and looked closely under his tongue with a light and magnifying glass. He found "a small, tight tie in an odd place". He was initially reluctant to clip it, asking how Sprout did with a bottle, but when I emphasized that a breastfeeding relationship was really important to me, he did clip the tie. It took just a minute or two and then Sprout was back in my arms, nursing.

Immediately after the clipping, there was a small but noticeable improvement in the number of sucks he could do without dropping -- we went from an average of 2-5 sucks to 5-8 sucks. The day after the clipping, we saw Sprout sticking his tongue out for the first time and heard his first baby vocalizations! So there was definitely a change; unfortunately, he still kept dropping the latch and I was still in pain.

Sprout and I went back to Amy, the LC at South Lake Hospital. She worked with us for quite a long time, trying different positions and techniques to no avail. She suggested that we spend some time helping Sprout to learn his new tongue mobility by playing games with him to get him to stick out his tongue. After few days of this, there was another slight improvement -- but things were still not very good.

At this point, I gave up for a while. I couldn't find anything more I could do. There were two options -- that he still had a posterior tie or that this way of breastfeeding had become a habit. I couldn't figure out a way to address either.

At 3 months old, I heard that another mom of a baby with a posterior tie was having some success with pediatric speech therapy. So Sprout and I got an appointment with Kari at Arnold Palmer Pediatric Rehabilitation. Kari was fabulous -- very knowledgeable about breastfeeding, very encouraging, and with some new exercises for us to try. Unfortunately, after a few days of them, Sprout got worse.

At the appointment, though, Kari had mentioned another doctor who clipped tongue ties, Dr. Ruiz of Central Florida Oral Surgery. I made an appointment with him, but wasn't able to be seen for a month.

When Sprout was 4 months old, we finally saw Dr. Ruiz. He was fabulous, and right away saw Sprout's posterior tie. However, he only does in-office clipping up to 3 months old. Because Sprout was 4 months, he would have to be put under general anesthesia for the procedure. We couldn't do that to him, seeing as he's healthy and gaining weight appropriately. It's really a comfort issue at his point -- Sprout is able to breastfeed, it's just painful for me and not particularly enjoyable or comforting for him.

So that's where things stand. Sprout is now 5 months old and still exclusively breastfed. Because of our breastfeeding difficulties, we waited until 12 weeks to introduce a bottle, which was apparently too late -- he refuses anything but straight-from-the-tap. He has good days and bad days, but he still drops his latch throughout the nursing session. My nipples have become fairly desensitized, but every feed is still painful to some degree or another.

There are still a lot of doctors out there who don't recognize tongue tie or don't understand the effect it has on a breastfeeding relationship. That's slowly changing, but anyone dealing with this is still going to have to push against a fair amount of opposition -- and push hard. Know that if you take the time to do the research, you will probably be more educated about the issue than your doctor. Use that knowledge to educate them -- and fight for treatment, if you have to.

5.5 month update -- Things got worse when Sprout got his two bottom teeth. I think it's because his nursing method is mostly compression and his tongue isn't completely covering his bottom gum. So every time he nurses, he's compressing my breast with his teeth with each suck. It's regressed to toe-curlingly painful. My supply also took a dive, probably because his technique was so bad. Unfortunately, the harder he has to work to get milk, the more the nursing hurts. I'm on various supply-boosting herbs and hoping they work soon.

6 month update -- It took about 3 weeks for things to resolve after Sprout pushed through those new teeth. Things are now slightly better than before the regression -- I'd say the majority of our nursing sessions are just slightly painful or not at all. There are still those that have me holding my breasts afterward, but they're much fewer. I'm not looking forward to the top teeth, though!

7 month update -- We got a couple weeks of decent nursing, but now Sprout's top teeth are coming in and I'm in terrible pain again from the compression. I'm hoping this follows the same pattern as with the bottom teeth and I can look forward to improvement in the next few weeks.

10.5 month update -- After the painful nursing because of teething, we went through a few bouts of thrush. That took me right back to the pain levels of early nursing. My pediatrician would treat Sprout but not me, so we passed it back and forth a few times until I finally pushed to get us both on Diflucan at the same time. Now, FINALLY, at 10 months I can say we are pain-free!!!!! Sprout still won't nurse for comfort and feeds are quick and to-the-point; if he lingers and comfort nurses, things get uncomfortable for me still. But I can feed him on a daily basis without tears. It's the most amazing thing, and I never thought we'd be here.

14 month update -- we are still nursing!