Mother’s Stories: Tori and Otto’s Tongue Tie Story

mothersstoriestoriandotto

The following is a story shared with me by Tori Caswell of Oklahoma.  I first heard her story in March this year.  She has shared it publicly before but has gone through more since then.  I am beginning a project to give a voice to mothers and share their breastfeeding stories, especially their tongue tie stories.  The following is the account by Tori.

In her words: I’m a homeschooling mama of 3 boys. I love being outside, walking, biking,  running and swimming. I also love being inside baking, writing and reading. I’ve recently taken up sewing and have a goal of making stockings by December!

Otto is our third child, third son born on September 21st, 2015. This was my third time to breastfeed. I was confident, educated and had worked as a volunteer breastfeeding support person for 8 years. I was committed to nursing him. Our problems started right away and came to a crescendo at 5 ½ months. I am unbearably embarrassed that it took me so long to let in the fact that it was a tongue-tie causing our problems. I carry a deep sadness for the suffering my son endured.

I have this blame in my hands, I keep trying to pass it off, to the pediatrician that told me “posterior tongue tie isn’t real” and that Otto wasn’t tied because he could extend his tongue out of his mouth. I keep trying to hand this blame to the speech pathologist who told me his tongue looked fine and not tied, just after she watched me let tears loose over how desperate I was to feed my baby. We scheduled a swallow study for a month out, the soonest they could squeeze us in. I had tried breastfeeding, 6 types of bottles, a Haberman feeder (which passively drips the milk in baby’s mouth) and ultimately found a syringe was the only way to get the milk inside my baby, even that, I would learn was being silently aspirated into his lungs. If I had I been giving him anything but my expressed milk he would have most likely contracted pneumonia. I wanted to blame the lactation consultant who watched me struggle to feed him in her office and told me that “posterior tongue ties aren’t a thing” and I should try a supplemental nursing system (SNS) which is this little tube you tape to your breast to give extra milk when they nurse. Here I stand though, blaming myself.

Haberman_FeederfreetousepictHabermanFeederCrosssectionfreetouse

Haberman Feeder example and chart of internal mechanism
SNS

Example of an SNS

I had literally 20 La Leche League Leaders from a Facebook group telling me “his symptoms sound like he’s tied” in response to my posts about how Otto:

  • Pulled off during letdown
  • Was noisy and fitful at the breast
  • Gagged and choked on bottles
  •  Hadn’t gained weight for a month
  • Wasn’t growing out of his 0-3 month clothing at 5 months old
  • Cried inconsolably and often
  • Had persistent thrush
  • Was overall unsettled and unhappy

When I go back and read my posts, I knew it was his tongue, but I didn’t trust myself. I wanted his pediatrician to diagnose it. I did call and make an appointment to see a dentist in OKC (Oklahoma City) who revised ties and had extra training in assessing for them, but that appointment was a month away.

I spiraled into a dark place of exhaustion, superstition, depression and complacency. I slept through my baby’s crying routinely. I spent every waking moment trying to feed him. I was growing shorter and shorter with my 2 older children. My husband would walk around the house for hours with our crying baby, so I could have a break. On March 4th, a Friday, we had yet another weight check with our pediatrician which yet again showed no growth in any way for a 2nd month. I couldn’t hold in my panic or my crazy any longer. She diagnosed him failure to thrive and we drew labs. I got a call the next day saying that his TSH was high and that they needed another sample to test for more serious things. She was thinking a hormonal growth problem. So we went to the ER and found his blood sodium was very low, dangerously low. He was admitted to OU Children’s Hospital in OKC that day.

Otto was physiologically starving, which is what was causing his low sodium. This is the reason anorexia is the most deadly mental disease, starvation is dangerous. When I look back at pictures of him during this time, I have to stop and not let it in, not unless I can go cry.

ottoblur

Taken 3/3/2016 (3 days before hospital admittance).

 

One thing I’ve learned about OU Children’s as a birth doula is that they are exceptionally good at finding pathology; they will scour a mother and baby to find it and then leap to treat it, aggressively and immediately. I’ve watched the cascade of interventions play out in the context of birth a dozen times; Otto’s hospital stay wasn’t unlike that. They checked his kidneys and found them to be enlarged. They checked his kidney function, all good. They checked if he was having reflux from his bladder, no he wasn’t. They checked his heart, all good. They begged and begged me to allow them to catheterize him to check for UTI, which I eventually did agree to and yes he had one. I firmly believe that his enlarged kidneys were either unrelated to or caused by his starvation and chronic dehydration. The only doctor that would even entertain that idea was the nephrologist (kidney) doctor. The lead pediatrician continued to supplement his sodium orally for the entire hospital stay and sent me home with a prescription for sodium, which I never gave him. His sodium was checked multiple times after our stay and was normal.

3 days tube feeding

Before and After: 3 days of tube feeding, taken day before tongue revision

After 6 hours of testing, Otto’s feeding tube was placed. He had it for 3 days and had to have it replaced 2 times because he pulled it out. After 3 days of more testing, Otto’s tongue-tie was revised by an ENT doctor who came to our room. Even the doctor exclaimed, “Wow, that released a lot!” immediately following the clip he made under Otto’s tongue. It literally took 1 second and his latch was instantly better. He drained my breast for the first time in his life. I had been reading and reading on Dr Ghaheri’s website about how to stretch a tongue revision to avoid regrowth; he called it “active wound management.” (For more information you can see Dr. Ghaheri’s Aftercare instructions here.) I asked the ENT doctor if I should stretch it, he said “no.” I did it anyways.

Then the next day, I asked the speech pathologist, who had done Otto’s swallow study the previous day and found his silent aspiration, if I should stretch his tongue and she said, “no.” I did it anyways. I would have danced in the halls naked if it meant that we weren’t going back to how things were before the revision. The feeding tube was removed the following day.

Otto’s weight went through the roof. It went from 20-30 grams every 24 hours (3 days of tube feeding 2 ounces every 2 hours) to 130 grams overnight, with unlimited access to the breast. I overheard the nurse giving report, “he’s been taking the breast a little bit here and there, 5 minutes at a time.” I interrupted them even though I wasn’t included in the conversation. “He’s actually been gorging himself, filling himself to bursting and it takes him less than 5 minutes to do it.” Blank stares.

photo

Otto sleeping with a full belly, first feeding after his first revision; he emptied my breast for the first time, I was overjoyed.

Over the following days, I met Otto for the first time; content, fed, happy Otto. My heart was soaring and I will be totally honest, I really enjoyed the break from my older children and from cooking and cleaning. We made friends with the cleaning woman and all our nurses and doctors and even some other patients. I pulled Otto in a red wagon through the halls, smiles everywhere.

On our last night in the hospital, I woke up in the middle of the night having a terrible nightmare, hyperventilating and screaming at the top of my lungs. Deeply disturbing imagery I still can’t speak about. The nurses came running in checking on Otto and finding him ok but stirring because I was being so loud. I couldn’t speak, to ask them to take him out of the room so I could regain my composure, two nurses stood at the bedside, quietly staring at the monitors, which were off because Otto was better and discharging the following morning. I tried to explain what had happened, I called my husband and tried to calm down. Finally a nurse came in and took Otto out of the room long enough for me to calm down. I heard Otto crying from the hallway, the nurse had started undressing him and weighing him because measuring him was their only way to comfort me, to assure me that he was ok despite my terrible dream.

We were discharged 7 days after admittance on a Sunday, the 14th of March.

before and after copy

There are 9 days between these photos.  The After is the day we discharged from the hospital, he had gained nearly 2 lbs.

 

My worst fears became a reality as we settled into our rhythm at home. Otto started pulling off the breast at letdown again. My supply dropped again. I called and made another appointment with the dentist who does laser revision and she got us in that same week. The 2nd revision took place on March 31st. The improvement was much slower and the recovery more painful I imagine as the cut was deeper. At this point Otto had suffered months of starvation, followed by tube feeding, poking and prodding, a scissor revision during a week long hospital stay, 2 weeks of 4 times a day oral stretches and then a 2nd revision (laser) followed by 3 more weeks of 4 times a day stretches. All this could have been avoided had my pediatrician known how to diagnose posterior tongue-tie or I had the guts to treat him for it despite her denial of it.

 

I wanted to believe that our system is set up to help mothers that have breastfeeding problems. I wanted my son’s pediatrician to know how to help us or who could help us, but she didn’t. Suddenly as our whole journey sinks in, the hospital stay, the scissor revision and then laser re-revision, I remember watching babies not latch, not gain, milk supplies tank, mothers battle sore and bleeding nipples and persistent thrush outbreaks. I suddenly realized that most of them were dealing with undiagnosed ties. They had come to me to help, but I had to tell them, “some babies don’t latch”, “some women can’t produce enough”, “some yeast just never goes all the way away”.

My experience with my tongue tied baby has left me humbled, hurting and jaded. I started this journey with very little trust and faith in our medical care system and have emerged with even less.

I feel susceptible to becoming a conspiracy theorist about this topic. I’ve learned that I myself am tongue tied and it’s led to many discomforts and traumas in my life. Colic my first year of life, constant ear infections, tubes placed in my ears, terrible overbite that required 9 years of braces to correct, removal of 4 adult teeth to fit my teeth in my mouth, mouth breathing that has led to terrible tooth decay and removal of another tooth, constant dry lips and neck and jaw tension. All these things could have been potentially avoided had my tie been recognized and resolved in my babyhood, but how many professionals then would have lost me as a patient and my parents as a customer. I’ve since learned that people aware of ties that work in hospitals like NICU staff and lactation consultants are given gag orders to not mention ties because they are not there to diagnose any condition. I’ve since learned that my situation is not unique and that ties are being missed by not just pediatricians but IBCLCs and ENTs and discounted as not causing breastfeeding problems or tooth decay problems or speech problems.
I want to see change. I want ties to be taught to all these professionals and more. I want treatment to be swift and for suffering to be avoided. I made folders containing all the information I could find for every doctor’s office in my town that saw babies and children, for our local ENT physician, for the IBCLC and the Speech Pathologist I saw. It’s how I began my emotional healing. I want to see a film made on this topic. The research is there, it’s been done, more is being done. My story is one of many.

otto happy daddy shirt

Otto, thriving and growing after his 2nd (laser) revision.

Tori is a birth doula in the Stillwater area of Oklahoma.  You can visit her website here.

If you are a mother interested in sharing YOUR story please email me at ashley@nurturingbonds.com.  I would love to hear and share your story.  All stories can help other mothers-positive or negative experiences.

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