After almost 10 years of trying to get my kids to eat, I decided to pull them out of feeding therapy. We have been going to weekly feeding therapy off and on since my son was 5 months old. We have seen therapists at our local hospital, therapists with years and years of experience, therapists two hours South of us, therapy at home. We participated in a 6 week intensive program at our local hospital where my son had feeding therapy daily before school. My daughter did vital stim daily for several weeks to teach her how to swallow. We have had moments of hope, envisioning our kids being weaned off the g-tube, being able to feed themselves, and loving food like we do. Both my kids have g-tubes. Both my kids struggle to eat. I’d like to share this part of our journey with you.
I was a postpartum Doula before I became a mom. This means I helped families in the precious days and weeks after coming home from the hospital (or giving birth at home). I was by the sides of moms supporting them in bonding with their babies, taking time to take care of themselves and helping moms transition as smoothly as possible into motherhood. Part of my role was to support moms in trouble shooting the challenges that can come up with breastfeeding. So when it was my turn to become a mom, I wanted more than anything to breastfeed my baby. I was never given this opportunity.
When Soliz was born, he was cut out of me and suddenly taken to the NICU where they took over care for him. This included placing an NG tube, a tube that goes through his nostril and down into his stomach. An NG tube is placed when it appears the child will not be strong enough to suck on his or her own. One component of the genetic syndrome my son was born with is hypotonia or low tone. This makes it difficult to breastfeed or even take a bottle for many babies born with Wolf Hirschhorn Syndrome (WHS). We didn’t know at the time of my son’s birth that he had WHS; we just knew that he was tiny, only 4 pounds 3 ounces (born full term). It turns out many kids with WHS have difficulty eating throughout their lifetime.
As soon as I was able to be with my baby, I brought him to my breast. I wanted him to know I was there with him and that I was his mom. It was clear that breastfeeding was going to be challenging for him, so I began to pump right away. If I wasn’t able to breastfeed him, I wanted him to at least benefit from my breastmilk. Thus began my long journey of pumping. Luckily, within the first 2 days I was able to wean my son of the NG tube and he was able to take a normal bottle efficiently enough for us to be discharged from the NICU after our 8 day stay. He came home from the NICU being able to drink freshly pumped breastmilk out of a bottle.
I did not give up hope that one day my baby would be able to latch on and nurse from my breast. We saw countless specialists, speech therapists early on, lactation consultants, we even had Soliz’ tongue tie surgically repaired in hopes that this would get him to nurse. After 9 months of trying to breastfeed, Soliz was never able to latch on. I pumped tirelessly for him, every 2 hours around the clock. I still barely had enough milk to give him at times. Each bottle we gave him was work for him and us. Drinking 2 ounces of breastmilk sometimes took him up to a half hour.
Eating is the body’s 3rd priority, only breathing and keeping one’s head up are of greater importance.
My story of my early years of motherhood and feeding my son (and later, my son and my daughter) becomes multi-layered, especially once I learned I was pregnant with my daughter around my son’s first birthday. At that time I took my son for his first annual check up and he wasn’t gaining weight. When we had initially come home from the hospital, he put on weight quickly. He clearly loved being at home with Mom and Dad and my Stepson (he lived with us at the time). Soliz really flourished on his mama’s milk and being at home. Around 6 months old, we began to introduce solids. Soliz showed a love for certain foods, but struggled to eat enough. At 18 months old he got his g-tube. Little did I know at the time his sister would also struggle to eat. The g-tube ended up being a god-send.
Three months later Camila was born at home. She was also very tiny. She had the same unusual long fingers like her brother. She had a coloboma in her left iris. She had trouble latching on to my breast immediately after birth. In my heart I knew something wasn’t quite right. Later on that day my lactation consultant came by to help with some breastfeeding challenges. She immediately said: “Camila’s palate is different. “ So instead of trying to help Camila breastfeed, we gave her a bottle. The next day we learned that Camila also had Wolf Hirschhorn Syndrome and she was born with a cleft palate, which would make it impossible for her to get suction when latching on to the breast. I started pumping around the clock again. I was so crushed inside but had no time to grieve this loss. I had babies to care for and feed. With Camila’s birth I dove deep into a world of just keeping my babies alive. There was hardly time for any enjoyment now. Our bonding truly suffered. I was so devastated about not being able to breastfeed that I never brought her to my breast for skin on skin bonding.
Eighteen months later, Camila also had a g-tube placed. At first I continued to pump fresh breast milk to give to her through her g-tube. We gradually weaned onto a homemade blended formula. A labor of love, which I completed each night with diligence and exhaustion for almost 10 years. I had a love-hate relationship with blending, pumping, and the g-tube(s). Each of them had their significant pros, which kept me determined to keep going, even when I was completely worn out. All the while, each of them had a significant con: Exhaustion. Feeding my children was taking up my life. While I was trying to keep them alive and give them life, my life was slowly being drained from me. There was no time for connecting with my husband at the end of the day or calling an old friend. Let alone any Self-Care.* My life had become all about feeding, pumping, blending and feeding therapy: getting my children to eat.
Eating is more difficult than walking or talking.
For many, the concept of children struggling to eat is difficult to understand. The truth is: Feeding Struggles affect up to 45% of typically developing children-Linscheld et al., 1995. For my children, who were both born with multiple disabilities, Feeding Struggles affect up to 80% of developmentally disabled children-Manikam & Perman, 2000.
My main goal was to get my children to eat. I wanted them to enjoy eating like I do, like my husband does, like their peers do. I wanted to take them to birthday parties and have them sit with their cousins or friends and enjoy eating birthday cake. I wanted us to sit as a family at dinner and eat together like other families do. I wanted them to feed themselves and savor a meal that I had slaved over all afternoon. I wanted to have a meal in public without having to pull out the extension tubes and syringes. So we spent years and years going to feeding therapy. We saw progress at times and at times nothing. But we kept trying. I was determined to see them progress.
Eating is the only bodily task that requires the use of every organ and all of the senses.
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My son turned 10 this year. In my heart I truly believe he does not need a g-tube but he is dependent on it now. The reality of weaning him gets less and less with each year. I always say, “if there were a terrible disaster and we were to lose all of our supplies (syringes, extension tubes, etc), I think he would survive” (as long as we had access to soft food), but my daughter wouldn’t. She is still unable to eat any significant volume even when the food is pureed.
And then, a few months ago our feeding therapist told me: “I don’t have the skill level to continue working with your kids.” This was the moment this 10 year journey ended. And so it is. Of course I spent a couple of weeks going back and forth about whether or not this was the right decision or do we try a different schedule and see if it would make a difference for the kids, etc. In those weeks of contemplating quitting, I realized, we have what we have been looking for. It’s right in front of us. We have a routine at mealtime. We sit down together. The kids are happy. We talk about our days, in the way that we do. We listen to music and dance. In fact we do “Dinnertime Karaoke” almost every night with our own playlist. My daughter loves it so much, she expects it and asks for it by bopping her head back and forth. My son sings along with my husband and my daughter dances and smiles and bonds with us and we are truly happy in these mealtime moments.
Don’t get me wrong. We haven’t completely given up hope that someday our kids will enjoy eating. We continue to offer them bites and tastes at each mealtime, along with their tube feeding. “My radical decision to end feeding therapy” is more about ending the search for a professional to “fix it”, to be the one to figure out how to get my kids to eat. I have backed off on that search and have made a conscious decision to put my energy towards what is working and what we enjoy together as a family. Someday that right person perhaps will come into our lives and be exactly the person to help my kids learn to eat. Maybe it will be a peer, a cousin or a friend. Maybe it will be certain food we haven’t offered them yet. My decision to stop the search feels so right. To see my children for who they are and not who I hope for them to be feels like a relief. So for now we will continue tube feeding our kids with pride wherever we go and singing “Dinnertime Karaoke” with vigor!
*I will be presenting the second part of this workshop for feeding matters.org on November 8th: “Planting a Seed Towards Self-Care”. Register below!!