Note: This is the third in a three part series from our guest poster on diagnosing and treating the breastfeeding issues in her infant son. Parts 1 and 2 were published earlier.
After making the decision to travel to New York to see Dr. Kotlow, I began to have doubts. What if tongue tie wasn’t the issue with Quinn? But deep down, I knew we were headed to find the answer we had been seeking.
We arrived at Dr. Kotlow’s clinic, a thriving pediatric dentistry practice, and were greeted by his wonderful office staff. Soon after we arrived we were shown to a small room with a large flat screen TV. We weren’t waiting long when Dr. Kotlow came in. He looked exactly like his pictures.
It was almost surreal seeing him in person. He remembered me from my emails to him, and from his conversation with Jennifer. He asked about our story, and about the steps I’d taken to get help before travelling to see him. He shook his head as he listened. He’d heard this same story many times before.
Then he examined Quinn. He sat with me knee-to-knee, and held Quinn’s head on his lap while I held Quinn’s bum and legs. Dr. Kotlow pulled back Quinn’s upper lip and confirmed that his lip tie needed to be divided. He then stuck both thumbs under Quinn’s tongue, one on either side, and told me to look. “That’s a posterior tongue tie.” At that point it was quite obvious.
It wasn’t a thin band of tissue, but rather a thick web, anchoring his tongue to the floor of his mouth. It limited his tongue mobility to the point that he could not coordinate sucking and swallowing. He could stick his tongue out past his lips, but that’s about all he could do.
Dr. Kotlow then had us watch a video that he’d made. It was about 15 minutes long. It was about tongue tie, lip tie, how it affects breastfeeding and how it also causes other problems, like reflux and dental problems when a baby’s teeth come in.
It showed how laser is used to divide a tongue tie and a lip tie. It showed the “exercises” we’d have to do after the procedure to ensure the surgery sites didn’t re-adhere.
He came back in after the video was over and asked if we were ready. We asked about anesthesia. Dr. Kotlow explained that using local anesthesia would actually take longer and cause more discomfort than the actual procedure, which would be over within seconds. They would give Quinn a swab of sugar water to suck on (it has an analgesic effect) and give him infant acetaminophen.
They promised he’d be back in my arms in 10 minutes. I handed him off, feeling like a horrible mother. I knew he’d be scared, and that it would probably hurt. But I knew it was the right decision. There really wasn’t a viable alternative.
I went to the bathroom to pump, so that it would be easy for Quinn to latch on when he was brought back to me. I got back to the room where I’d left my aunt, and within another minute or so, Dr. Kotlow came back carrying my sweet little baby.
Quinn looked rather bewildered, and there was a spot of blood on his shirt, but I knew he was going to be OK.
I took him and put him to the breast immediately and for the first time, it felt “right.” There was no clicking, no slipping down the nipple, no pulling off, no gagging, gasping, coughing or sputtering. There were no splayed fingers, no arched back. He just nursed like a baby is supposed to nurse.
He did that for a couple of minutes and then came off. He was a bit out of sorts, but I knew, I just knew, everything was going to be fine. We stayed at the clinic for about 2 hours after that. Even after closing. Dr. Kotlow was hoping Quinn would nurse again before we left. He didn’t, but I knew once we settled in to our hotel that night, he would.
We went over the exercises again and Dr. Kotlow really impressed upon us how important they were. I promised I would do them. I certainly didn’t want to have to make a return trip.
We left and drove as far as Rochester before stopping for the night. On the road I pumped and fed my milk to Quinn in a bottle, as he was still refusing the breast. That night though, when we laid down in bed, he nursed like I knew he would. And he nursed a couple times over night and again in the morning. And it was wonderful. It was like the tongue tie never existed.
A few days later Quinn and I flew home. I could tell he was already beginning to regain the weight he’d lost. He was nursing so well and doing a much better job of emptying my breasts when he fed.
Within a week of the appointment with Dr. Kotlow, my thrush infection was gone (without further treatment) as were the horrible vasospasms I’d been experiencing. By 2 weeks post-op, Quinn had gained a full pound.
Not only were our medical issues resolving, but my whole experience of mothering this child changed. Prior to the tongue tie and lip tie surgery, I’d been having a rather difficult time emotionally. While I felt I had bonded with my baby, the whole experience was incredibly stressful. Every feeding was stressful. The constant pain of persistent thrush wears on you. Having your baby reject you is heartbreaking. Having a baby labelled “failure to thrive” is crushing.
And having health care providers tell you everything is fine when you know it is not is maddening. There were points in time during the whole ordeal that I started questioning my sanity. I began to wonder if I was making it up. When I finally got help from Jennifer, and then Dr. Kotlow, it was as if the weight of the world had been lifted. They validated my experience and my knowledge. And they offered us answers.
About the Author
Amber Snow
I very much enjoyed reading this Amber. I’m so glad that Quinn finally got the help he needed. The medical profession needs to take moms more seriously. We know when there’s a problem with our babies!
I’m so glad you posted this Amber! I was struggling with putting weight on my little girl and went to so many people because I felt something wasn’t right and it wasn’t until I went to a La Leche League meeting with Amber that she put all the issues together and suggested this. At 2 weeks she hadn’t regained her birth weight, I had thrush, my milk supply had dwindled (which was due to a piece of placenta being left in me). I went to the breast feeding clinic with several complaints: 1. weight gain 2. noisy eating 3. pain in breast (which was a blocked duct like I had suspected) 4. choking and sputtering while feeding. Everything was just passed off as “she’s just little” and “perhaps that’s just the way she eats” and “you have a strong letdown, she can’t handle it yet”. While her weight was becoming an issue enough that the breastfeeding clinic and the public health nurse were concerned, I went to my Doctor and the first time she didn’t even acknowledge my concerns, the second time she said “she’s just small, your family and her Dad are small, so is she. She’s alert and happy, she’s fine” She did NOT chart her on the growth charts and got me to come back in 2 weeks. After 2 weeks she once again saw me and said she had no concerns (again without charting her). I waited for her to go on vacation and saw her replacement and this time brought in a booklet of information I put together with Amber’s help, including growth charts that showed she had droped from the 85 percentile at birth to below the 5th percentile at 3 months. She was shocked and told me Anna was failure to thrive. We ended up flying to Toronto to get it fixed. I wish someone had figured it out sooner, perhaps she wouldn’t have dropped so low on the charts!
Amber, you wrote beautifully about what must have been such an ordeal for all of you. It sounds like your experience is already helping other moms and babies. Kudos to you for fighting so hard to find out what was wrong and now for raising awareness about tongue tie. (I love the picture of Quinn too. Kissable!)
Thanks for posting Allie! And you as well, Cynthia, for sharing your story.
I should also point out, that due to brevity I ended up leaving out some important information. Jennifer Tow, my IBCLC, stresses the importance of having craniosacral therapy soon after having the tongue tie released. The movement of the tongue helps shape the palate and the oral cavity in utero and after birth. Having a tongue tie limits movement, and causes issues with mouth and jaw development. So releasing the tongue tie is not enough. These babies need CST to help with these issues. Especially if there’s been a delay in having the tongue tie fixed. (It’s optimally done in the first month, if not first week, of life.) So while Quinn and I did experience an immediate improvement, this was helped along by seeing a chiropractor soon after returning. And also by doing the stretching exercises, to ensure the sites did not re-adhere. Many moms will notice the biggest improvement not after having the tongue tie released, but after the baby has had CST.
Amber:
You’re a wonderful mother and friend. I love you! I’m so glad that Quinn is doing so well. Much love you and your boys (and Steve).
xo, Sue
Thank you for your post. After reading it I realized we had a lot in common…to list a few..frequent thrush, my son refusing to nurse in public, days where he pushed me away and only nursed for a couple of minutes at a time but was fine over night while lying down…After reading your blog I looked at his lip and it was tied. I only wish I had spotted it sooner he is 6 months old. Lucky, for us we live in the Albany area. 2 days after I read your blog we saw Dr. Kotlow. My son had a tongue tie and lip tie fixed this morning. He is already nursing better!! Thanks again!!!
I found breastfeeding my 3rd child challenging. He never seemed satisfied, always popping off and on the breast, was very gassy, and several other issues including slow weight gain. Weekly visits to the breastfeeding clinic did not provide any answers. It was only after speaking with another Mom whose child had recently had a tongue tie corrected, did I think to check my son. He had a very obvious anterior tongue tie and a lot of the issues we were having, were common in tongue tie babies.
My son was already being closely followed by our GP due to slow weight gain. At 8 weeks he was down to 30th percentile from 95th @ birth. I pointed out the tongue tie to the GP, she examined him and immediately made a referral to an E.N.T. It took 3 weeks to get into see the E.N.T. He examined my son, diagnosed the tongue tie, and suggested correcting it immediately. The procedure took less than a minute and my son breastfed immediately after. He started to gain weight well, and many of the other issues we had disappeared.
I believe further training is needed for staff working with breastfeeding moms to check for tongue tie and make timely and appropriate referrals if correction is needed.
Thanks for posting Cynthia and Karen! Hopefully sharing our stories will bring about the change that’s needed!
Thank you so much for writing this, you don’t know how relieved I am to finally read an article that I can relate to. After reading so many articles about tongue tie and trying to piece together all of my 12 wk old daughters symptoms, I was dreading that it would be to tongue tie and maybe upper lip tie as well. She’s been having the same exact issues since birth, and having several conversations with a LC, and treating plugged ducts, oversupply, over active letdown, she was finally checked for a tongue tie. We went to an ENT and he said it was mild and didn’t need to be corrected if she is gaining weight. And my LO has been gaining well, most likely because of my oversupply, but I’ve been noticing my supply decrease, especially with on my left side. So for the past few nights, I’ve been reading like mad to compare scenarios and decide what should be done. And I’m so relieved to have come to the conclusion that my daughter needs this done, and Dr. Kotlow seems to be the right Dr. to do it.
Thank you so much. Now I can see the light at the end of the tunnel and it’s not just all in my head.
Wow, I feel like reading my own story. I’m mother of 6 weeks baby girl from Poland an thank you so much for sharing this. My doctors dont even bother asking me if I have nursing problems, they just tell me to switch immediately to formula, because she’s not gaining at all. Luckily we have our first LLL Leader and google working well!
Wow Amber, it’s like reading our own journey.
You are amazing for getting to the bottom of it and not giving in to those around you telling you nothing was wrong when you knew there was something wrong.
I hope your and Quinn’s nursing relationship has improved immensely, just as ours has.
Here is a link to our guest blog talking about our story http://blog.naturalurbanmamas.com/?p=2579
I wish I knew how important the cranial therapy was. We had our daughter’s tongue tie clipped at 1 week old but she never sucked right (compressed nipple). Now she is 16 weeks old and I exclusively pump. However she still has feeding issues (clicking sound when she eats).
Jess, I don’t know if you’ll see this or not, but are you working with an IBCLC? That’s so important! Also there is a tongue tie support group on Facebook: https://www.facebook.com/groups/30008320854/ Please visit and post!
Irene, I’m so glad that you’re figuring it all out. It’s such a relief when you’re able to piece it all together! I hope you come back and post an update when you get it all sorted out.
Joanna, thanks for posting. I’m going to try to get around to reading your blog post tonight.
Justyna, I hate to hear about health care providers jumping to suggest supplementation rather than finding the cause of the issue. Most health care providers have no idea of how many issues a tongue tie can cause.
I actually worked with the IBCLC that is with Dr. Hazelbaker, a renown tongue tie expert. However insurance only covered a small amount and we live over an hour away so we stopped going. Thanks for the FB info. I just requested to join!