Day 16: What's a Tongue-Tie Doula?

I have known Jessica for over a decade, and she has been an excellent source of information through the years. We have had parallel lives in opposite sides of the country, right down to our tongue tied first babies. Moving in the circle of birth support, breastfeeding help, and the intense caring that comes with walking beside a family while they struggle -- these are not new concept to doulas. It is no surprise that Jessica brings all the best elements of doulas into the world of lactation and tongue tie. 

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I’ve been a doula-ing most of life, long before I was a professional birth, then postpartum, doula. How is that? Well, the term doula may have started with birth, but the role, the intention, is really about continuous support. We now have postpartum doulas and bereavement doulas. There are even end of life doulas. To doula is to be someone well-informed about an experience another person is having and to offer continuous support. It’s about meeting that other person where they are and offering to be fully present with them as they experience intense feelings, sensations, and processes. It means to be open and supportive of their loved ones as they work to balance their own needs and that of the primary person in this particular journey.
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• When a friend in middle school struggled with nosebleeds that were uncomfortable and embarrassing and I would go with her quietly to a rarely used bathroom, hide in a stall with her and figure out what she needed to get back to feeling normal, that was doula-ing.
• When a friend in high school told me and me alone that she was having a miscarriage from an unplanned pregnancy that she had shared with no one, and I went home with her to sit with that process, that was doula-ing.
• When a friend’s dog was dying and being put to sleep and I sat with them at the veterinarian’s office and held space for that experience, that was doula-ing.

These are intense experiences through which I offered continuous support for people involved -- I met them where they were and included as much information as I could in how the process might be eased for them. I offered guidance in what choices they had to make. In each experience there was struggle and joy and pain, humor and grief. Things that might be petty to others were looming, and things that might overwhelm another were handled with resilience.

​This brings me to where I am now in my life and career. I call myself a tongue tie doula. What does that mean? It makes sense to start with the literal. Tongue Tie is the common term for the medical condition ankyloglossia.  It’s where the lingual frenulum (band of tissue that connects the tongue to the floor of the mouth) is restricted of function through being too far forward, too short, or lacking elasticity -- or some combination of these.

One might wonder how a person might be a doula for a medical condition? In the same way a birth doula supports a person or people experiencing birth, a tongue tie doula supports a person or people experiencing tongue tie. This role has formed as I found my private practice as an IBCLC merge with my experience as a birth doula. 

In May of 2005 I gave birth to my second child. I was already working in lactation and quite committed to breastfeeding. It was a long and very painful process for both of us to find a somewhat normal breastfeeding relationship. Despite being surrounded by world class support, most of my son’s early days are a fog of pain and confusion for me. He was six weeks old before I found out, be it through lucky coincidence or kismet, that he had a posterior tongue tie. From there, I learned. Then I taught. The doula in me began to appreciate that resolving tongue tie, even in a baby, is most often not an event; it’s a process. It’s one that is usually emotional, often painful, and frequently fairly complicated. I would hold people’s hands, both literally and metaphorically, as they made hard choices, moved with their baby through the procedure to release oral restrictions, supported their baby in recovery and healing, and dealt with their own needs throughout. People who’d had a birth doula would often say, “It’s like you were a doula for the revision!”

Many professionals within the tongue tie community who are experts in tongue tie have a plethora of knowledge. Many provide excellent recommendation, tools, and protocols for the process of gaining function from oral restrictions. The doula factor adds continuous support. There are amazing midwives and doctors who provide excellent, thoughtful, family-centered birth care. They are not doulas because they do not offer fully present continuous support. I know midwives who also work as doulas outside of their midwife roles and they will tell you that the roles are not the same. As a doula who is also a midwife, they may have a lot of information with which to guide families, but the difference comes in the emotional, fully present support that accompanies that information.

​As a tongue tie doula, my role is like this. Just as many IBCLCs are exceptionally educated about tethered oral tissues (TOTs), I provide referrals, recommendations, tools, and protocols to families as they work to help their baby obtain full oral function. My role goes one step further, however. I also provide emotional support before, often during, and after the release procedure. I meet them where they are when they struggle with choosing a direction in which to go, as far as medical procedures and various therapies, especially in the face of frequently contradicting recommendations. I hold space as they grieve the newborn and breastfeeding experiences they had envisioned or vent about how hard the whole process is.

Am I the only tongue tie doula out there? Far from it. I know amazing people and professionals in many fields who are tongue tie doulas. Some don’t even know it. Many don’t appreciate the nuances of the care they provide as they see the bigger picture of people’s lives and families as a unit. Many tongue tie doulas are creating bigger-picture care plans never knowing that this perspective is often neglected in the lives of the families they serve. My fellow tongue tie doulas, whatever title they may be using, are the ones holding mothers as they cry, and sitting with fathers as they rage, and empathizing with babies as they struggle to learn a skill they were meant to learn before ever breathing air. Always on the cutting edge of care, we work to support evolution toward improvement. We never settle for accepting an unmet need. And we always, always know that at the end of the day, the parents and babies are the real heroes.

Because doula-ing is not about the medical condition. It’s about the human condition.

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Jessica Altemara has been an IBLCLC in private practice for 7 years. She officially became a birth doula in 2004 after being surrounded by birth and breastfeeding her whole life due to a mother who was an IBCLC, doula, and L&D RN. She's passionate about staying on the cutting edge of care in her own practice and in the information she shares with her clients about practices in general; valuing a functional medicine mindset. Jessica offers in-person and online education not only to parents but also to professionals.  She's a mother of 4, ages 13-3, in Chapel Hill, NC where she and her husband enjoy the dramatic mixture of technology and nature the area provides.

Be sure to visit and "like" her Facebook page to receive updates and information: Tongue Tie Doula.

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