From Liz Ellen on Facebook

Liz Ellen

January 7

My daughter Ady was born 11/7/2009 at 39+5 weeks. I went into labor on my own, but ended up with a c-section. My water broke on it’s own as well, but Ady was not engaged, so I wasn’t allowed to get up and walk around due to risk of cord prolapse. During labor, my BP was upwards of 175/110 and sometimes higher. We finally went section when baby started having concerning decels from which she didn’t recover well. She was 9#4oz, 21 inches long.

The first day, she was a perfect angel. She didn’t cry, slept a lot. She also didn’t want to latch. I had a lot of “help” from the IBCLC at the hospital, which consisted mostly of her grabbing the baby out of my arms and forcing her onto my breast. I had to tickle her chin throughout every feeding to get her to even try to suck. The LC told me she was a lazy baby and that I needed to throw out my formula samples so that I wouldn’t be tempted to use it when she was not interested in latching. She explained that because she was lazy, she would not want to latch again if she were to have a bottle, since bottles are easier to suck from. When we left the hospital 48 hours after birth, she had only lost 2 oz, so we assumed she was getting enough milk.

Nursing continued pretty much the same as it had at the hospital. I would have to encourage her to want to eat, she never seemed hungry, but I tried to stick with an every 2 hours feeding plan anyway. At her 1 week apt, she was still 9#2oz, so she hadn’t lost anything, but she also hadn’t gained anything. The pediatrician suggested seeing an LC to make sure she was getting enough. That LC never did weighed feeds, just gave me a laundry list of galactagogues to use and showed me different ways to latch her. She as well told me to toss any formula I had, after I asked if supplementing would help. According to her, supplementing always ruins the breastfeeding relationship. She was checked for a tongue and lip tie and determined not to have one, so the term lazy latcher continued. 

At 2 weeks, she was back up to her birth weight of 9#4oz. A 2oz gain in 2 weeks. At this point, she was still happy and sleeping fairly well, and her cheeks were still full.
We went about our merry way and thought things were turning around. By this time, I was taking fenugreek and drinking mother’s milk tea, as well as practically drowning myself in fluids. The pediatrician recommended another weight check to be sure and so at 4 weeks, we had another visit. She had gained nothing in two weeks. And yet, somehow, he was not concerned. “Bigger babies don’t gain fast at first”. I had my 6 week post partum check up and talked with the OB about my concerns. She sent me off to a compounding pharmacy with a prescription for Domperidone. I didn’t really know all that much about it and since my OB said she had used it for herself with great success, I just assumed it would do what I needed it to. 

I think it’s possible that the meds did something, because Ady was up to 10# even at her 2 month weigh in at 9 weeks, a gain of 12oz in 5 weeks (from her 4 week check up to 9 weeks). We traveled to my inlaws right after that apt and everything started to go downhill from there. She started refusing to latch, she would scream when I tried to feed her. Car rides became a daily thing to calm her down and get her to nap at all, and my parents started taking her as well so I could get some sleep. It was sometime around the end of January (around 11-12 weeks) that things came to a head. I couldn’t get her to calm down, it had been about 6 hours since she had eaten and I had been trying for nearly 3 hours to get her to latch, calm down, get her to latch, calm down. My husband called my parents because he didn’t know what to do to help. They showed up with a can of formula, a bottle, bottled water and instructions for me to go take a long shower and try to relax and breathe. When I came back down, Ady had had 10oz of formula and was such a different baby. She was actually sleeping, calmly, in my mom’s arms. After that first bottle, I went to a schedule of nurse, supplement, pump for a few weeks until I couldn’t take it anymore. She was drinking at least 4oz bottles after every feed and it was obvious she wasn’t getting pretty much anything from me. So we switched to all pumping, every two hours, and power pumping in the evenings, and feeding her what milk I could pump plus formula. What I pumped was very watery looking, with almost no fat content. So on top of not producing much, I also didn’t have healthy milk either. Why the LC never thought to check that, I don’t know. I finally decided I just couldn’t keep pumping and we switched to all formula.

Ady grew incredibly well on formula. She was 13#8oz at her 4 month check up. She started sleeping and became a very happy baby. Today, she has a few side effects from the lack of nutrition. She has nodules on her vocal chords from screaming so much as a baby. Thankfully, those are shrinking ever so slowly and her voice is getting better. I’ve had multiple little kids ask me or her why her voice didn’t sound right. To me, that question was like a knife in my heart because I know it could have been avoided. Ady also sees a gastroenterologist due to motility issues. They believe the issues are caused by the lack of proper nutrition and hydration, and over time, those also have gotten far better. She’s had multiple bouts of non-sickness related diarrhea that caused her to lose some weight, and other times, we have to treat her with miralax to help her go. But those episodes are getting few and far between and she’s growing so well now. She’s in the 94% for weight and 87% for height. I know she is healthy and happy now, but I still feel so guilty for everything that happened. 

I have since reported the pediatrician, both LCs and my OB. I reported my OB for mistreatment during my pregnancy, as she ignored my concerns about possible pre-eclampsia (like gaining 8# in 5 days, swelling more than 2 shoe sizes, headaches all the time). My current OB and MFM agree that I definitely had pre-e, based on my history/charts that were sent to them. I believe that had she taken my concerns seriously, we at least would not have had quite the traumatic start we did and that might have helped both of us. I also reported her for prescribing domperidone. She has since been forced out of the hospital I deliver at and is now with a different hospital. Many of her patients have left her because of poor treatment as well.
The hospital LC has undergone more training. She apologized to me this past March for her treatment of me 6 years ago. She said she knows now that formula supplementation can actually improve the breastfeeding experience and she’s been better trained to recognize issues related to PCOS, Insulin resistance, IGT, and other hormonal imbalances. Nothing has been done about the other LC or the pediatrician.

The first three photos were all taken between 4 and 10 weeks of age. She had lost her full cheeks, her arms were skin and bones and she was pale. I have no photos of her at her worst because I was so horrified about how sick she had gotten without my seeing it THEN that I had my husband delete them. I have absolutely zero pictures of Ady from the month of February at all. The last picture is of Ady the end of March, close to 5 months old. She was back to her happy self, full cheeks and a full belly.