When I was pregnant with Bekah, I had a sense that something was different about her. It wasn’t something I put into words often, but I knew. We were planning our first homebirth and had all of the supplies ready. The day I turned 35 weeks, my water broke. That put me out of the running for a homebirth, much to our disappointment. After consulting with our midwife, we needed to make the decision to either go to Dallas and deliver with her back-up OB or go to Ft. Worth and deliver with a hospital-based midwife group. After some debating, we decided to go with our midwife’s backup. We assumed that if he was her backup, he must be natural-birth friendly and supportive of our wishes. How wrong we were! He was far from supportive and was NOT happy with me expressing my own desires & opinions. Needless to say, we were not friends by the time Bekah was born! I am so thankful that God gave me the courage to stand up for myself and my baby. She would not have fared well with the interventions that the OB kept pushing. Anyway, I guess that is a story for another day. Now, on to the breastfeeding part of this story.
Despite the fact that Bekah was coming 5 weeks early, it never occurred to me that she would have difficulty breastfeeding. After all, I was a lactation consultant. Of course she would breastfeed! (In hind sight, I wish that I had at least made sure I had access to donor milk, just in case.) She was born weighing 5lbs 12oz and initially appeared to be very healthy. She latched on shortly after birth, but didn’t feed well. When it was time for her newborn exam, her blood sugar was very low. After much debating and trying to express colostrum without any luck, we ended up allowing her to be supplemented with formula. Over the next 5 days, we battled low blood sugar, difficulty maintaining body temp (which, much to the amazement of the nursing staff, was remedied by almost constant skin-to-skin contact) and jaundice. We dealt with so much misinformation about breastfeeding that it was astounding. One nurse even told us that Bekah was having trouble having bowel movements because colostrum is constipating! My amazing hubby took her out into the hall and lectured her for 15 minutes. To make a long story short (the hospital stay could be a blog post all its own!) we left AMA on day 5, still struggling to breastfeed. It was a real eye-opener for me on how even the strongest parents can make poor decisions when they are constantly battered by medical professionals.
For the first five weeks of her life, we nursed, pumped and finger-fed her pumped milk. It was exhausting. She was barely gaining weight, spit up A LOT and could not be put down without instant screaming. In desperation, I did an elimination diet and determined that she could not tolerate dairy or soy in my diet. I eliminated these foods and the spit-up decreased dramatically. Chiropractic care took care of the rest. She began gaining weight a bit better, but was still on the very low end of normal. By that time, she was past her due-date and “should have” been doing much better with breastfeeding. We finally got her to the point that she could breastfeed well enough that I didn’t have to pump and supplement her with expressed milk, but she couldn’t maintain the latch for more than a minute or two. She popped on and off and would nurse for 30 minutes or so before she fell asleep, exhausted. She was nursing every hour or two. By her two-month appointment, we were really questioning the pediatrician on what was “wrong” with Bekah – why was she still so floppy, why was she gaining weight so slowly when my other two kids had gained very rapidly, why did she still have almost no head control, why wasn’t she smiling or making any eye contact with us? They had no answers, other than “she was a preemie, she will catch up.” I remember thinking that 5 weeks was not that much of a preemie. At about that time, the OB who had delivered her called to say “Oh, by the way, you had a two-vessel umbilical cord, which can be associated with mid-line birth defects.” He recommended that we have her kidneys & heart checked. We had an ultrasound done of her kidneys and a full check-up on her heart. Thankfully, these tests came back normal, but we still had no answers.
I frequently got comments about how tiny she was. A stranger at a restaurant said “You need to feed that baby!” At every well-child visit, we would ask the same questions but no one ever addressed the hypotonia, or any of the other issues we were seeing. Finally, at her 4 month visit, the pediatrician acknowledged that there might be some kind of issue but said we just needed to wait and see. Shortly after that, I went to a La Leche League Conference and had the privilege of hearing Catherine Watson-Genna speak on two issues that ended up having a big impact for us – sensory processing disorder and tongue-tie/suck dysfunction. I had brought Bekah along with me to the conference, and after the session on tongue tie, I went up to talk to her about Bekah. She held Bekah and immediately noted her low tone, the way she held her hands, the lack of eye contact, the “funky” way she moved her tongue (my term, not hers) and I felt so validated! Finally! She wasn’t sure if Bekah indeed had a tongue tie or not, but recommended having her evaluated by an Ear, Nose & Throat doctor. As soon as we got home, I made an appointment to see Dr. Biavati in Dallas. He walked in the room, briefly looked at her tongue, then started looking at her hands, her eyes, and asking about my other kids. I thought it was very strange that he was examining these other areas when I was there to see if she was tongue-tied. He finally said, very gently “Well, she is not tongue-tied, but I believe she has something called Niikawa-Kuroki Syndrome” (more commonly known as Kabuki Syndrome.) I was so relieved! Finally, we had a name for what we were dealing with. I think Dr. Biavati was a little confused by my reaction. I think he expected me to break down and cry, but I was just so relieved to know what was going on that it didn’t occur to me at the time to be upset. He recommended a geneticist in Plano who was familiar with the syndrome, which is pretty rare. We saw the geneticist, who agreed with the diagnosis.
Once we got a diagnosis for Bekah, it seemed that the pressure to give her formula increased exponentially. Something about being labeled “special needs” seems to insure, in the minds of many people, that breastfeeding is not adequate. Somehow, people seemed to think that formula would be the “magic cure” that would make her grow. Thankfully, I had connected with a group of other parents of kids with Kabuki Syndrome. Two things became very obvious to me, very quickly. One is that kids with Kabuki Syndrome just don’t grow very fast when they are little. This holds true whether they are formula fed, breastfed or even tube-fed. Virtually every parent expressed their frustrations with the gain-lose-gain roller-coaster that our kids were on. The second thing that was obvious to me was that some of the issues that kids with Kabuki Syndrome struggle with could be helped by breastfeeding – immune system dysfunctions, poor oral motor skills that made eating and talking difficult, digestive issues, IQ, etc. It made me more determined than ever to make sure that Bekah got as much time breastfeeding as she could, even if it meant that she had to nurse all day and all night to get in enough calories. (Lest people think that we could have made things easier on her by giving her a bottle, she struggled even more with bottles. If we had not worked so hard to make breastfeeding work for her, she would have been on a feeding tube.) We spent quite a bit of time educating therapists, doctors and nurses. It was frustrating to feel that we were always telling them what they should already know. The older Bekah got, the greater the pressure got to stop breastfeeding – we were frequently told that if we would just stop breastfeeding her, she would eat more solid foods and grow more. What I knew in my heart was that if we stopped breastfeeding her, we would be taking away her best source of nutrition and protection for her immune system with no guarantee that she would do any better with solid foods. Our persistence paid off though and I am so very glad that we stuck with it. Bekah is sick far less than most other kids with Kabuki Syndrome and has never been hospitalized, she eats well now and has a very healthy diet, and she talks up a storm! Breast milk is not magic and she still struggles daily with many of the effects of her syndrome, but I know without a doubt that she would struggle so much harder without the good foundation that 25 months of breastfeeding gave her.
There were several people who supported us throughout the first two years that still hold a very, very special place in my heart. Some gave regular support and validation, like my dear friend Mary Ann and our amazing chiropractor , who we saw very frequently those first 2 years- Dr. Betsy Taylor. Some were there for a few months, but made a huge impact, like her first OT, Merrit Kazda and others, who answered our questions without judgment and supported our desire to make alternative healthcare decisions for Bekah. We could not have done it without them!
Some people feel sorry for us because we have a child with special needs. We don’t feel sorry for ourselves though. We are so incredibly grateful that Bekah was chosen for us. We have learned so much from her and have been very blessed to have her in our lives.
As a lactation consultant, I have also learned a tremendous amount from my experience breastfeeding Bekah. I have learned in a much more personal way how breastfeeding is about so much more than just the food, or even the bonding. Breastfeeding is a normal developmental milestone. Just like any other developmental milestone, if it is skipped, it has an effect on many other developmental processes. I have learned that, even when breastfeeding doesn’t look like we thought it would, it is definitely worth the effort. I have a special passion for helping other parents with special-needs infants to breastfeed and I am thankful for the experience with Bekah that has enabled me to help even more mothers and babies.
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