Tethered Oral Tissues (TOTS) can consist of either a tongue tie (where the thin piece of skin under a baby’s tongue restricts movement of the tongue) or where the upper lip is restricted due to being anchored to the gum.
This thin membrane of tissue should undergo cell death during embryonic development but in some cases will fail to do so, thus, creating a “tethered-like” cord of tissue. TOTS is a condition that often runs in families and is said to have a genetic component.
Research implicating tongue tie with difficulties in breastfeeding suggests a broad span; anywhere from 25-60% incidence of breastfeeding associated difficulties such as: failure to thrive, maternal nipple damage, maternal breast pain, poor milk supply as well as difficulty latching and refusing the breast. Some studies have shown that for every day of maternal pain during the first three weeks of breastfeeding, there is a 10-26% risk of stopping breastfeeding. However, difficulties with breastfeeding alone should not be the only concern in order to consider evaluating a baby for TOTS and for possible intervention.
Additional TOTS Complications
In one study, tongue tie was associated with the displacement of the epiglottis and larynx. Infants with this disorder were known to have difficulty breathing. These infants’ arterial oxygen percent saturation levels were measured during three different times; asleep, suckling and awake. The results showed that their SaO2 was unstable and slightly low; symptoms similar to those observed in victims of sudden infant death syndrome (SIDS) before their death. Unstable or low SaO2 levels may also lead to neurological and developmental issues in children.
In the case of an upper lip tie (ULT), the baby may not be able to obtain a proper latch or seal on the breast. A successful latch occurs when the baby is able to flair their upper lip and take both the areola and the nipple in their mouth. When a baby has an upper lip tie, they are unable to flair their top lip out effectively (like fish lips) and may only take the nipple into their mouth. This may lead to a poor seal and swallowing excessive amounts of air during feeding. The air in the baby’s belly can then lead to symptoms of colic or reflux and unnecessary medications may be prescribed. Lip ties can also hold mother’s milk on the front surface of the upper front teeth during night time at-will feeding, leading to dental decay.
Children with TOTS may also have speech difficulties that may require extensive speech therapy.
TOTS-related Symptoms for Mother and Baby
For the infant, common symptoms related to TOTS may include the following: several unsuccessful attempts at nursing; colic, gassy, reflux; failure to gain weight or thrive; unsustained latch, calloused or blistered lips; and sinus congestion or snoring.
For the mother, the most common symptoms may include: painful latch, cut or cracked areas; bleeding nipples; flattened, blanched or creased nipples; failure to bond with the infant leading to depression; or plugged ducts, engorgement, mastitis or thrush.