Otto's Tongue Tie Story

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Tori is the mother of three boys, a La Leche League Leader, and a birth doula. Her baby, Otto, was born in September, 2015 -- he had ties, but no one really knew until his weight dropped in response to his decreased desire to eat. In Tori's words, she documents their journey, and how hard it was to find help while her baby was struggling to eat and grow.

Notice Otto's mouth full of sucking calluses!

www.katielewphotography.com

"Here's a timeline of our journey to the breast. 
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Born Sept 21 2015, weighing 9lb 3oz, noisy latch, unsettled baby, needy baby.

Jan 2016- weight arrested at 13lb 4oz (in hindsight, because milk supply tanked and no longer fueled by postpartum hormones, looking for adequate sucking to maintain it, baby not sucking adequately or very long per feeding). He would pull off at letdown, refused to latch deeply and the bottom lip never flanged like it's supposed to.

Feb 2016- weight unchanged for 1 month, I started pumping, building back my supply and trying every way under the sun to supplement. SNS, Haberman feeder, syringe, 8 different types and flows of bottles, all with little success. Syringe was best because required no sucking and because of severe posterior tongue tie he was unable to suck properly.

In Feb I saw our Ped, LC, and Speech Pathologist. All 3 professionals examined his mouth and stated that tongue tie was not present, because he could thrust his tongue out of his mouth. I mentioned posterior tongue tie with all 3 professionals and was told in so many words, 'it's not real.'

I had 2 meetings with speech pathologist who encouraged me to spoon feed him and use Haberman feeder to help avoid mouth aversion. She refereed us to Children's Hospital to have a barium swallow study done to watch on X Ray my baby swallowing, mainly to check for silent aspiration which can over time cause pneumonia. The soonest they could get my baby in was April 7th, 2016, 2 months from the time the study was requested.

Over this month my frustration and desperation grew to a crippling degree. I didn't sleep, I was spoon, syringe, bottle, breast feeding around the clock. My baby was fussy but never showed signs of dehydration that I was told to look for (soft spot sunken, dry lips, listlessness, dark urine, few diapers). He had normal large stools and urinated clearish non-smelly urine 12 times per day. At urging of Speech Path, I started keeping a detailed log of every single bit he would eat. I did this for 5 days, it varied from 14 oz to 20 oz, guessing with how much transferred during breastfeeding.

March 4th 2016- I took him for another weight check with Ped. Still no weight gain. 2nd month. I lost it in the office. She offered to draw labs on him and I said yes. Labs showed a drop in blood sodium levels. 

March 6th- we repeat labs at emergency room and sent to Childrens because of sodium. By this time I had connected finally with dentist who does posterior tongue tie revision. It's $500, and our insurance was not accepted, so I had been trying for several weeks to get an appointment and gather the money to pay for it. I wanted to revise him before our hospital stay, but both Drs agreed he was too sick. So we put it off until after the stay. 

March 7th- after 6 hours of stress for my exhausted baby, with multiple more lab and urine draws, Children's finally placed a feeding tube in my baby. We fed him through a tube down his nose, 2 oz every 2 hours for 3 days. His weight gain was on average 15 grams per day. They were also supplementing his sodium and watching it closely to make sure it was rising, and it was. 

March 8th- Barium swallow study performed and severe tongue restriction and silent aspiration of syringe feeding observed.

March 9th- I was persistent enough to get an ENT doctor in my hospital room to revise his tongue. This doctor used a long metal tool to lift my baby's tongue deeply and revealed a frenulum far back under his tongue that no one had ever laid eyes on before. The ENT doc cut this about 1/2 inch long piece of skin and handed my baby to me. My baby IMMEDIATELY latched differently than he ever had, drained my entire breast, which he never had done, and we only did one feeding through the tube that day as he learned to use his newly released tongue. ENT doctor exclaimed 'Oh, that released a lot,' when he did it, in surprise.

March 10th- morning weight gain was 130 grams after breastfeeding all night.

March 11th- consulted with speech path, ped doc and ENT about stretching his tongue to keep revision from re-adhering and all told me not to, but because of my own research I did it anyways. 

March 13th- constant weight gain of on average 120 grams per day and maintained sodium levels, so we went home.

I'm attaching two pictures, that were taken 9 days apart. The first one is the day of the lab draw and the 2nd one is the day of hospital release.

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I believe sodium levels were low because my baby was starving, not unlike someone with anorexia. I received consults from endocrinologists, geneticists, nephrologists (kidney doctor), lactation consultants, urologists and speech pathologists during our hospital stay. The doctors didn't think sodium was low because of his lack of feeding but were searching for other causes. They did an ultrasound on his kidneys and discovered they were enlarged, but recommended just watching them every few months to ensure they don't get worse. It's my opinion that the kidney issue is unrelated to the sodium levels, but there are still some tests out on his hormones that will answer that for sure (adrenal hormones).

I urge you to educate yourself, if you work with moms and babies, and stop telling mothers that posterior tongue tie isn't real, and to start learning how to clinically recognize it. My case was typical yet on the extreme side, and my baby and I were made to suffer because it went untreated.

I'm personally feeling a huge amount of guilt, and the months leading up to our hospital stay were traumatic for us both. I share this with you in love and kindness and hope you will learn and grow as I have."

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I am grateful to Tori and her willingness to share her story. Tori and Otto were let down by many health professionals -- any one's education or awareness could have quickly changed the course of events before hospitalization was needed. Tori has chosen to contact these health professionals, not to stir angry feelings or place blame, but to simply ask them to learn more, so they can help the next family and prevent complicated issues like she and Otto faced.

• Writing a letter to a care provider can be difficult -- there are so many strong emotions! Advocates for Tongue Tie Education offers templates to help you take those first steps once you feel ready to share your story: Provider Education Letter Templates and Resources.
• For provider resources to include, Tori chose Dr. Bobby Ghaheri's website.
  
• To find a provider who can treat, or support closer to home, visit Advocates for Tongue Tie Education's website.