Malina & Carter's Story

My name is Malina. My boyfriend and I have a 6 month old baby boy together named Carter, who was born on September 9th, 2013 at six pounds, 12 ounces. That day was the start of an emotional journey for us. Carter was diagnosed with reflux when he was a little over a month old and was having a very hard time gaining weight with breastfeeding because of it. Because of this, we supplemented with several different formulas including Elecare. I completely changed my diet and eliminated dairy, soy and a few other "main allergy" products. It was hard to change my diet, but breast feeding my son meant more to me than a good meal any day. At Carter’s three month appointment, the nurse started freaking out over his weight. Being a first time mother, I had no idea that his weight was even an issue as our pediatrician never seemed to be worried about it. At three months old, he weighed a little over 8 pounds.

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Since the nurse was so concerned about his weight, I called and asked for an appointment the next day to ask about seeing a GI doctor. Our pediatrician denied us a referral and switched his reflux medication for the fourth time. I felt we obviously weren’t a right fit for her and set up an appointment with a new pediatrician’s office. I told them a little bit about Carter and they saw him the next day. At that appointment, we were tested for a few different things, given a GI appointment, and scheduled a upper GI barium test. The GI test came back, but the doctor was very concerned and immediately started saying I could no longer breastfeed. They wanted me to give him a special formula called Elecare and admit him to the children’s hospital immediately for failure to thrive. I was in such shock and panicking because it had come to the point that my baby was not okay. It scared me so much the doctor agreed for us to wait a few days and see how he did with the special formula. He set up three tests and an appointment with him a few days later and asked me to come prepared to be admitted into the hospital.

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I  pulled it together and we came out of that appointment desperate for the Elecare to work, but it didn’t. In fact, the formula made his reflux so bad that he would not keep any of it down. A few days later, he was tested for cystic fibrosis and given  a barium enema test. Both came back normal, but since the Elecare didn’t help, they wanted to admit him. My poor baby was then hooked up to an IV and then had test after test. All of them came back fine. During our time at the hospital, a lactation consultant came in and looked over Carter. She asked me some questions. She gave me a piece of paper with referrals and told me he had a tongue tie and an upper lip tie. I was so hopeful that this could be the answer to all of our problems! The LC agreed to talk to our doctor about it. Unfortunately, our doctor brushed her concerns off and told me that he did not have a tongue or lip tie. I was so disappointed. They continued to run tests but couldn’t find anything wrong. It didn’t make any sense to me that if my baby was so underweight that he needed to be hospitalized while they couldn’t tell me what was wrong with him. The doctors started pushing feeding tubes on me. I finally caved and agreed to it and after a week of hospitalization, we got to go home. We had a follow up appointment with our GI two weeks later. At that appointment, Carter was weighed. He had not done any better really on the feeding tube only gaining two ounces in two weeks.  I made the decision to have the tube taken out and started looking for more answers.

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Carter's Posterior Tongue-Tie

I remembered what the lactation consultant had said and found the papers she had given me. I joined the Tongue Tie Babies Support Group on Facebook. I kept reading all of these success stories and after about two week I posted photos of my son. I had so many people tell me that he absolutely had ties, so I called the suggested oral surgeon that the lactation consultant had given us. We got lucky and someone had canceled and we got an appointment the next day! When we went in, the oral surgeon immediately agreed that he was tied and clipped him that day. This was almost two weeks ago and I could not be more excited about the difference it has made in Carter. He hardly spits up at all.  When he does, it does not even compare to how it used to be! He has gained two pounds in two weeks- going from 12 pounds to 14 pounds. Tongue ties are real, and they can cause so many problems. I cannot tell you enough how happy yet disappointed I am.  I am happy because my son and I finally have a new start and answers! We are breastfeeding again and he is eating solids- something that we couldn't do while he was being treated. I am disappointed because it took our providers six long, stressful months to figure out something so small and so simple was the cause of our issues. i am now on a mission to help raise awareness for this problem because I cannot let another baby suffer as long as mine did!

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