After a normal pregnancy and an easy delivery my second son Liam was born in April 2015. He was a healthy baby boy.
Within a few hours of his birth, I noticed Liam had an extremely high and arched palate. It looked like his palate was scooped out. I requested that the staff pediatrician and staff lactation consultant examine Liam. Both the lactation consultant and pediatrician said that Liam’s palate seemed kind of high but normal. I asked them both to check for abnormalities including tongue-ties and they both said he was fine. If a baby is tongue tied their tongue's range of motion is restricted because the tissue under the tongue is connected to the floor of their mouth. In some cases, you can actually see the tie. If you can not see the tie, it is hard to diagnose which I now know.
I tried to feed Liam right after birth but we struggled from the beginning. He sort of latched but did not suck. The lactation consultant said he did not have a suck reflex because he had birth trauma from too much epidural during labor. She said it would wear off and he would be okay. Liam and I really struggled breastfeeding in the hospital but I remained optimistic. I was prepared and determined to breastfeed him exclusively as I struggled to breastfeed my first born son. I thought everything I learned the first time I would now utilize to my advantage.
When we were discharged, everyone at the hospital suggested I see his pediatrician the next day because he had already lost so much weight but they also were incredibly positive and said I would have no problem exclusively nursing him.
Our first night home was awful. He would not nurse and was hysterical. My neighbor had just had a baby and I asked her to come over to help us. I remember feeling so desperate that I wished she would have offered to nurse him for me.
The next day, I took him to see the nurse practitioner/lactation consultant at our pediatrician’s office. She said he had lost more than ten percent of his birth weight and I needed to start supplementing. She also told me he had colic which my first son also had. I asked her to check if he was tongue-tied and she assured me that he was fine.
Supplementing was really hard. He did not like bottles or formula. I would nurse and then offer a bottle. Sometimes he would take a bottle but often he wouldn’t. When he wouldn't take a bottle, I assumed he had had enough. I had never met a baby who couldn’t drink from a bottle but Liam really struggled with bottles so we kept buying more and more of different designs thinking he just didn’t like them. By the time he was about 4 months old we had accumulated nine different brands of bottles. The only one he was able to use was an obscure, expensive and high-needs bottle called Haberman’s that didn’t require sucking.
I breastfed Liam all day and all night. He had no pattern or consistency. Sometimes he would nurse for five minutes and other times for an hour. He would often fall asleep only to awaken within minutes seemingly hungry but not trying to nurse, just upset. He often broke out in a complete sweat when nursing which was disturbing, but I was told by a different lactation consultant that it was just hormones. He was a very unsettled baby. He didn’t sleep well and he never seemed satiated. He was pale and skinny, crying often and had terrible reflux. I took him to the pediatrician every two weeks for weight checks. He was gaining weight extremely slowly. While they insisted that he was okay, he did not seem okay to me. Something was wrong with Liam and I started to feel disconnected from him. I also noticed that sensory issues were developing. He started to hate bath time. He would scream as if I were torturing him so I could only give him sponge baths. He was constantly uncomfortable. I stopped taking pictures of him because he always looked miserable. He would become hysterical if I pushed his stroller over any bumps and was very easily startled and scared by loud noises. He also would get upset any time I dressed or undressed him.
I took him to two different breastfeeding support groups thinking maybe they would see something his pediatrician didn’t. Both the group’s lactation consultants told me had a good latch and was a good nurser. It was incredibly confusing. On one hand, it was what I wanted to hear but at the same time it didn't make sense. Liam was barely gaining weight and wasn’t advancing with developmental milestones.
When he was about two months old, I begged Liam’s pediatrician for a referral to an ENT. I was really concerned with his high palate and was convinced that that was causing our problems. I ended up paying out of pocket to see a pediatric ENT who had a great reputation. He had been head of Children's Hospital in Los Angeles and I was told his word was gold. After examining Liam and his palate he told me there was nothing to worry about. He said Liam is “just a booger” and I need to quit nursing and start formula feeding. I left feeling defeated, unsettled and patronized and couldn't believe I had paid this man $200. By this point, Liam had now been evaluated by two pediatricians, four lactation consultants and now the ENT. They all said he was fine. I felt like a crazy person on a wild goose chase.
At Liam’s 4 month check up, his doctor was finally concerned. His weight dropped to the 4th percentile and she said she would need to start treating him as ‘Failure to Thrive’. She told me to start block feeding to ensure he gets enough hind (fatty) milk and start baby cereal to help him gain. I didn't want to start him on solids yet but I did not know what else to do. So I followed her directions. When we came back two weeks later he was below zero percent and officially off the charts. I felt like this was my fault and a result of not taking good enough care of him. I was devastated and so worried but I knew he was not a ‘Failure to Thrive’ baby.
As soon as I got home, I started researching tongue ties and learned that he and I had almost every single symptom! Until that point, I had only researched high palates. Only then did I find out his high palate was a result of his tongue tie. Everything suddenly made sense and I was hoping this was the answer.
I contacted Elena Vogel, an internationally board certified lactation consultant (IBCLC), whom I found through a tongue tie group on Facebook. She examined him in our home and diagnosed Liam with a posterior tongue tie and an upper lip tie which prevented him from being able to nurse and even bottle feed. I cried from relief as well as anger that we had been dismissed since birth. She told me he was essentially starving and gave me new supplementing directions. He needed to have his tongue and upper lip revised by a pediatric dentist. He was too weak for the tongue revision at that time so we had to bulk him up before his procedure. Our goal was for him to gain 4 ounces within two weeks but with her directions he gained almost one pound! It was a huge accomplishment and turning point. He was sleeping better and becoming a happier baby. Through our lactation consultant we were introduced to a new team of providers who's support helped Liam right away.
Two weeks later, when he was 5 months old, we had his posterior tongue tie revised. I nursed him immediately after the procedure and heard him gulping for the first time.
After the revision, he was finally able to drink with ease from a regular baby bottle. Prior to that the only bottle he could drink from was the special needs bottle. We still struggled with nursing but being able to feed him from a regular bottle was a huge relief. My intentions were to exclusively nurse Liam but I still had to supplement because of my low milk supply and for him to gain weight. I had to pump regularly and take a dozen different supplements to help my supply. Liam was nursing better than before but it still was very challenging. He would only nurse in particular positions and would only nurse at home. He was used to be being hungry and I felt like I had to gently force feed him or he often wouldn't eat and that was always extremely stressful. Although I had been determined to exclusively nurse him my priorities changed and I was now determined to get Liam back to a normal weight and to start catching up with milestones. I was extremely drained from pumping, nursing and bottle feeding while also taking care of him and his older brother. Taking all the supplements and pumping became another stress and when he was nine months old I stopped taking the supplements. Within a week or two of stopping the supplements my milk supply was gone and he didn’t seem to mind. Quitting breastfeeding was very hard emotionally because I fought so hard to nurse him but bottle feeding was now easier for him and me.
Although no one can say for sure, most of Liam’s providers believe that his physical delays stem from being malnourished in his early months. For too many months, he struggled so much to eat that he had no energy for anything else. Low muscle tone in his shoulders and arms diminished his ability to grab things or bear any weight on his arms. We are treating this with physical and occupational therapy three times a week and probably will until he is two years old. I’ve been warned he may also need speech therapy and extensive dental work as he gets older because of the tongue tie.
I recently came face to face with the ENT who examined Liam and reminded him who we were and told him Liam’s story. He became dismissive and said some tongue tied babys are just fine. Liam obviously was not one of these babies but he said he would not argue this with me. I just wanted to share our experience with him so future babies and moms don't continue to get misdiagnosed but I still don’t think he heard me.
Liam is now one year old and in the 35th percentile for weight and only getting bigger. He is a totally different baby but it is hard to look at pictures from his first four months. I still feel ill when I think about all he went through. All the signs were there and yet it took so much to get him diagnosed. I am most certain had I not found Elena he would have ended up in the hospital. Liam had an extreme case and it took too long to get proper care. Had there only been more knowledge he could have avoided all that trauma. I am so grateful for all of Liam’s progress and how far he has come. He is a strong baby but he has needlessly gone through so much pain. Had his tongue tie been diagnosed at birth or even within the first two months, we mostly likely could have avoided all of this and that makes me so angry and sad. I informed all of his providers and the hospital of Liam’s story. Actually I tell our story all the time in hope that we can make a difference so no other babies have to struggle the way he did.