Many may want to know the reason I have started Help with Ties. I encourage you to read my journey as some of you can probably relate.
I was passionate about having a breastfeeding relationship with my son, since I’d had issues nursing my daughter several years earlier. In addition to my research and taking a breastfeeding class, I also met with one of the lactation specialists at the hospital, prior to giving birth. I delivered Dylan on February 15, 2017 at 3:20 a.m. It was a quick and easy birthing experience, and I was happy that my nurse helped me breastfeed! Although he fell off the breast quite often, I continued to put him back on. Unfortunately, Dylan’s blood sugar was less than 50 and he was jittery. As a result, I was informed that he needed formula at this time. Although I was disappointed, I knew that it was necessary to keep his glucose levels within normal limits. The next morning, the lactation specialist, who I had met prior assisted me with breastfeeding. Regrettably, Dylan was not passing the hypoglycemic protocol. I was encouraged by the lactation specialist to do skin to skin contact and continue to breastfeed, and I made the decision to supplement formula to prevent my newborn from having to be admitted into the neonatal ICU (which was going to the result if he did not pass the hypoglycemic protocol).
Eventually, Dylan’s glucose levels normalized, and we were discharged home. I continued to attempt to breastfeed, but our troubles persisted after leaving the hospital. Dylan experienced months of severe fussiness, acid reflux, abdominal discomfort, poor weight gain, inability to sleep (me too!), and a bark-like cough that wouldn’t go away. I knew something had to be wrong with him. Those three months were torturous, not only to my son, to me as well. I remember having two to three doctors’ appointments in one day to various specialists trying to help Dylan. This was very difficult, particularly because I not only had Dylan to care for, but also my three-year-old daughter as well. As a nurse and a mother of two, I was at a complete loss, but knew that I had to keep trying for my little boy. His GI symptoms at that point became so severe that he was placed on several medications for acid reflux. In addition, my breastfeeding journey ended at that point as well, as I could not take the pain of his latch and could not keep up with the demands of pumping. Little did I know at the time that all his complications were being caused by undiagnosed and very restrictive lip and tongue ties.
At every turn during this experience, not one of Dylan’s doctors had brought up the possibility of him having lip and tongue ties. It was only through my own persistence and exhaustive online research that I was able to discover what might be the cause of his issues. Eventually, I encountered a Facebook support group for mothers with babies with acid reflux that asked members to answer questions regarding their child’s symptoms. The second question I was required to answer was to check for a lip and tongue on Dylan. This sparked my attention because coincidentally, a couple days prior, I had taken Jasmine, my three-year-old, to her routine dental appointment with our pediatric dentist, and Dylan was with me. During Jasmine’s check-up, the dentist casually asked me if Dylan had a lip or tongue tie. I said he did not because Dylan’s pediatrician (nor any of his other specialists) had never informed me of this. Following the instructions, I found on the mom’s support group, I checked Dylan for the ties myself, and to my surprise, it was clear that my baby had very restrictive posterior tongue and lip ties.
At that moment, it all came full circle for me: Dylan was hypoglycemic at birth because his ties caused him to struggle to suck milk out of my breast (limiting the amount of nutrients and calories he needed to sustain a normal glucose level); he was consuming large amounts air when drinking from a bottle, greatly contributing to his fussiness and GI issues; in addition, he had torticollis as a result from the stiff muscles in his neck and face due to his tongue being tied down. Once it all became clear to me, I called our pediatric dentist office as soon as they opened that Saturday morning to schedule an appointment. Unfortunately, the office was not able to fit us in for another week. My next step was to contact another office. I received another pediatric dentist information via a lip and tongue-tie support group.We consulted with him in person the following day and he was able to remove Dylan’s ties during that same visit. At no point during this journey had anyone but Jasmine’s dentist, even brought up the fact that Dylan could have lip and tongue ties. It was clear to me that I was alone in this process and had to navigate Dylan’s care on my own.
At this stage in the process, I had done so much research regarding lip and tongue ties that I knew Dylan would benefit from both chiropractic and cranial sacral treatments. We started cranial sacral therapy the first day post-operative. Unfortunately, however, the cranial sacral therapist was not knowledgeable with lip and tongue releases. I was fortunate enough to find a phenomenal local pediatric chiropractor. After his first 2 sessions, Dylan was able to completely roll over and turn his neck from side to side. Prior to that, he was only able to turn his head to the left. I kept Dylan in therapy for about 6 months. The first two weeks of recovery after his lip and tongue tie release were horrendous. On the third week, it was like having a new baby. A HAPPY baby.
Once Dylan’s complications were resolved and he was finally doing well, the trauma of what he and I had been through really hit me all at once. I went to a very dark place. Thankfully, with the right treatment and the support of family and friends, I am doing well!
I can’t help but feel that If my son’s lip and tongue ties were diagnosed in the hospital, I would have immediately gotten him help to alleviate most of his symptoms and would have been able to continue breastfeeding. The three months that I took off from work were supposed to be full of mother/baby bonding. Instead, it was draining for my son and for me. As a matter of fact, I still have PTSD from those days. When I returned to work from maternity leave, I ran into my lactation specialist. I explained to her that my son had been diagnosed with a lip and tongue ties, causing both of us a great deal of distress. She proceeded to explain that when she helped me in the hospital, she had in fact suspected that he had ties. However, she also explained that she is not allowed to diagnose ties, which was surprising to me. As I continue to do more research on this subject, however, I now understand that lactation specialists lack the support from pediatricians to identify and diagnosis ties. Since she spent so much time helping me when he was born, I would have greatly appreciated her insight to help Dylan.
With all, my experience with Dylan has moved me to help other parents out there who find themselves in a similar predicament. I want to help spread the word about how ties can affect a baby in every stage of development; whether it’s breastfeeding issues, sleeping and gastrointestinal disorders, or speech and other developmental delays, undiagnosed tongue and lip ties can severely limit a child’s potential and cause unnecessary distress to parents and caregivers. Like me, most mothers are now turning to social media for answers because their own doctors are lacking the knowledge regarding lip and tongue ties. However, there is a wealth of research available now on the subject, and it is my goal to get more healthcare providers onboard to prevent other mothers to have to experience what I went through. I have started Help With Ties, an organization developed to provide education and support to parents and the healthcare community regarding this important issue. By sharing my story others, combined with providing hard-core evidence on every aspect of this subject, I hope to empower healthcare providers so that the evaluation, diagnosis and treatment of lip and tongue ties can become a routine aspect of a newborn’s care. Through Help With Ties, I also plan on providing post-partum support for parents of babies with ties, helping them navigate through the complicated process of dealing with this issue, from diagnosis to post-operative support.
Thank you in advance for taking the time read about my experience and for hopefully supporting me during this adventure. I would love to assist you and your family any way I can.