This is the story of how we found out Quinn was tongue tied, and the journey we went through to find care providers who would help us. Thought I would post it here as well.
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My second child, Quinn was born March 20th, 2011. It was a lovely, uncomplicated home birth. I nursed him as soon as he seemed the least bit interested. Jesse was present at the birth and was wonderful through it all. (I’d done a lot to prepare him for the birth, so that it wouldn’t scare him. We also had my mom there to watch him and look out for him if he’d needed to go elsewhere while I laboured.) I did have to go to the hospital for a couple hours for sutures, but other than that, the birth was wonderful.
Breastfeeding was going seemingly wonderful as well. Jesse, seeing a
new baby on mommy’s boobies, decided that weaning just wasn’t in the cards. So
I happily nursed them together. My milk came in the next night. I didn’t get
engorged. I didn’t have any pain. Quinn was (and still is) a very easy baby. He
started sleeping 5-6 hour stretches the second night. He nursed quickly (too
quickly, I now realize) and seemingly easily. He did lose nearly 10% of his
birth weight, but regained it by 2 weeks. And he continued to gain adequately
in those first weeks. He was very laid back, content, and rarely cried. I had
oodles of milk. I was well rested and felt great. I thanked my lucky stars that
everything was going so well.
As time went on I started to wonder about a few things that
I’d picked up on in regard to Quinn’s nursing. He was always a very noisy
nursling. I remember attending a documentary screening when he was 2 weeks old,
and they had to turn up the volume in the theatre because the noise from Quinn
nursing was drowning out the sound of the documentary. He was a very messy
nursling. Milk leaked from the corners of his mouth, and he’d often pop off the
breast coughing and sputtering. He even seemed to be aspirating my milk, and
always sounded congested. There were also several episodes of “power-puking” where
he’d projectile vomit an `entire feed. I attributed all of this to my supposed
“overactive letdown.” There was also a noticeable click when he nursed, and his
tongue always felt like it was flicking my nipple. Early on I attributed these things to him
being a newborn, and fully expected him to be a pro within a few weeks.
By the time Quinn was 6 weeks old, I started to realize that
something was just not right. Instead of getting better, things seemed to be
getting worse. Our nursing sessions seemed to always end in frustration, with
both of us in tears, and me holding him up and asking him, “What’s wrong?! I
don’t understand what you want!” I avoided nursing him in public (something I’d
done unashamedly with Jesse) because it was too difficult and frustrating.
That’s when I came across a blog post by the Analytical Armadillo, a lactation
consultant in the UK, called “Tongue Tie, the Hidden Cause of FeedingProblems?”
It struck me that we had at least half of the symptoms of tongue tie. Since
Quinn didn’t look tongue tied to me, I check him for a lip tie, which was also
described in the post, and sure enough, he had one. I thought this must be the
cause of our feeding issues, so I started on my journey to find someone to
help. (The fact that it wasn’t painful and there was no damage to my milk
supply was easily explained by the fact that I was still nursing my first
child.)
Quinn's lip tie - the reason he wasn't able to flange his top lip
It was also at 6 weeks that I got my first of four blocked
ducts and developed a persistent thrush infection. I started taking lecithin to prevent blocked
ducts and followed Dr. Jack Newman’s Candida Protocol to get rid of the thrush,
both without success. I also started experiencing painful vasospasms. Though Quinn never did develop any signs of
thrush himself, at 2 months of age, he began refusing to nurse. Even when he
was obviously hungry, he would cry when I’d try to bring him in to my breast.
He also started losing weight. I sought
out help from lactation consultants and family doctors. I brought journal
articles with me. No one seemed to have ever heard of a lip tie. I asked about
the possibility of a posterior tongue tie (also called a submucosal tongue
tie), and I was told that if the baby could stick his tongue out, then he
wasn’t tongue tied. I was referred to a plastic surgeon for the tongue tie
(even though I’d asked to be referred to an ENT). The plastic surgeon said I
had a perfectly healthy baby and there was nothing wrong. I took him to a dentist,
and again, was told he was perfectly healthy and normal. Our problems were
blamed on oversupply, over-active milk ejection reflex, shallow latch, lazy
baby, and my toddler nurse so much that I wasn’t leaving enough for my infant.
I tried nursing my toddler for a minute first to relieve the engorgement I
continued to experience and to relieve my first let down (I typically have 2-3 letdowns per side) so
that the baby would be less distressed and be able to handle the flow, and also
so that he would get a better balance of foremilk and hindmilk. It didn’t help.
I was told to nurse the baby first and the toddler second, to make sure the
baby got enough milk. That made things worse.
And he continued to lose weight.
As he neared 3 months, he was refusing to nurse every time,
except for bedtime, when I’d nurse him lying down, in the dark. He had better
head control, and most of the milk leaked out the corner of his mouth. He was
much less distressed when I nursed him this way. I started to nurse him lying
down for naps as well. It worked sometimes. Out of desperation, I tried giving
him breast milk in a bottle. He struggled with that too. He couldn’t coordinate
sucking and swallowing. He gagged, coughed, and sputtered. And refused. A
lactation consultant offered to come to my house and set me up with an at the
breast supplemental nursing system. I refused. I knew it wouldn’t help, and
would likely make things worse. The problem wasn’t my supply. And it wasn’t
even totally a milk transfer issue. MORE milk in his mouth would not help. He
couldn’t suck and swallow properly. Nursing wasn’t comforting for him. But he
wanted to suck. He sucked on his hands, on my fingers, on anything he could get
in his mouth. I gave in and bought a pacifier. He loved it, but he was unable
to hold it in his mouth. I had to hold it there for him. I feared for our
breastfeeding relationship. I had a knot in my stomach 24 hours a day, 7 days a
week. Mothering at the breast was the only way I knew. I didn’t know how I
could be a mother without nursing. Even if the solution had simply been to bottle
feed, that wouldn’t have worked for our family. I suppose I would have made it
work, but I would have felt a great sense of loss.
After getting nowhere with the health care providers I
talked to, and knowing that if something didn’t change soon he’d end up with a
nasogastric tube, I sent a Facebook message to Emma Kwasnica, a Montreal-based
birth and breastfeeding activist. She posted my message as her status. It got
an immediate response. One of the people
who took the time to try to help me was Jennifer Tow, a lactation consultant
based in France, who has a great deal of experience with tongue ties. She
listened to our story. I told her about the breastfeeding difficulties, the
weight loss, the refusal to nurse. I told her about my weeks long battle with
thrush. She said that she suspected Quinn had not only a lip tie, but a
posterior tongue tie. It would explain everything, including why I could not
kick the candida. She had me take pictures and send them to her. Based on
those, she was pretty certain that was exactly what we were dealing with. The
decision was made pretty quickly to travel to a tongue tie specialist to get
help for Quinn.
See the tongue tie? Yeah, I didn't either. But it's there.
I considered taking Quinn to Dr. Newman in Toronto, but we
was very busy over the coming few weeks. I also contacted Dr. Howard Mitnick of the Goldfarb Breastfeeding Clinic at the Jewish General Hospital inMontreal. But he wanted us to stay in
the city for 8 days for follow-up. Knowing I’d have to leave my toddler at
home, I felt that was excessive. Jennifer encouraged me to travel to Albany, NY
to see Dr. Lawrence Kotlow, a pediatric dentist who uses laser to divide tongue
ties and lip ties. He is one of the most highly regarded tongue tie specialist
in the world. So I made plans to fly to
Toronto, where I would stay with my aunt, and we would drive down to Albany. I
made and appointment, applied for my passport, and booked our flight.
In the meantime, I went to a follow-up appointment and
weight check with our family doctor, who I was seeing for the first time for
this issue. (I’d seen other family doctors at the clinic previously, as our own
doctor had been too busy to see us on short notice.) He had a lactation
consultant meet us there. Quinn was
weighed. At 3 months of age, he was now
down to the same weight as when he was 2 months. They watched me nurse him, or,
rather, try to nurse him. They both agreed that there was definitely something
“not right.” I told them I had a provisional tongue tie diagnosis from someone
with a lot of experience with tongue ties. They both said they didn’t see a
tongue tie. I asked them, if it wasn’t tongue tie, then what did they think was
wrong. The lactation consultant shook her head and said, “I don’t know.” My
doctor said, “I don’t know, but I admit, I’ve never heard of a posterior tongue
tie.” He then offered to help in any way he could to get the costs of the trip
covered.
On June 22nd, Quinn and I flew to Toronto. The next morning,
my aunt and I got up at 5 am and drove the 6 hours to Albany. I was a bundle of
nerves. I was terrified he’d look in Quinn’s mouth and tell me he wasn’t tongue
tied. What then? But I knew deep down that he wouldn’t say that. My gut told me
we had our answer.
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.
Quinn and I with Dr. Kotlow
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. Dr. K went over the exercises again and 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.
Aunt Cindy, Quinn and I at Tim Hortons in Rochester
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.
