This guest post shares a look from the perspective of a mother with a 5 year old son with neurological disorders. Jeanie decided to share her story after seeing a thread on The Leaky Boob Facebook page asking about breastfeeding issues as potential early signs of neurological issues in an infant. Whether you recognize yourself and/or your child, a friend, or family member in Jeanie’s story, we hope you will share it to encourage others.
My name is Jeanie and I am the author/page admin for a blog and Facebook page called Reinventing Mommy, which is all about raising my 5 year old son with Autism and multiple neurological disorders. I want to share my story in hopes that others will learn that feeding difficulties can be an early red flag for developmental concerns…
My son Jack was born on March 23, 2009 after 28 hours of labor which resulted in an emergency c-section. I had preeclampsia during the last 4 weeks of my pregnancy, so Jack was born at exactly 37 weeks. Due to the nature of my delivery, I wasn’t given the opportunity to nurse my son in the recovery room. No one even suggested it. I didn’t know it was even an option.
The first time I nursed Jack was in our postpartum room. One of the floor nurses tried to assist me in latching the baby on and – for all I knew – it was going great. The nurse mentioned that she would be sending lactation in to see me ASAP the following day (it was nearing 11:00 PM); her reasoning was that babies born prior to 38 weeks got an automatic referral to lactation. She suggested that I send the baby to the nursery that night so I could recover a bit further, and that the baby would be brought to me to nurse. I agreed.
The next day a lactation consultant came in. I was planning to show her just how great I was doing nursing my baby – clearly I didn’t need her at all! – but instead I was told that not only was my son not latching on at all, he wasn’t sucking properly. This began a journey of using a nipple shield, suck training, and an every 3 hour schedule of nursing Jack for 15 minutes per side then feeding him a supplemental bottle then pumping for 15 minutes. All this while recovering from major abdominal surgery. Every day I was hospitalized, lactation consultants were in and out trying to assist me.
When I was discharged, lactation continued with phone consults. Jack’s pediatrician was of little help. No one ever said that Jack wasn’t eating normally. I just thought that this was what everyone went through. I was constantly assured that all babies can breastfeed and that I just needed to work harder. The pressure on me was enormous. I felt like a failure.
Then came the day that Jack refused to take to the breast at all. He simply would not open his mouth for the nipple shield at all. My milk was drying up from the lack of stimulation and Jack wasn’t gaining weight, so we finally gave up and moved to a bottle and formula.
The problem was that Jack’s feeding issues didn’t resolve with the bottle. Now that he was actually taking in liquid, he began to vomit his entire meal about 5-6 times a day. When I mentioned how much he would “spit up”, I was told that the amount really was probably no more than a couple of tablespoons. What no one truly understood was that he could fill a bowl when he spit up. No one listened when I voiced my concerns that Jack’s eating behaviors didn’t seem typical. Again, I felt like a failure as a mother, because I couldn’t do something as simple as feed my own child.
At the age of 24 months, Jack was only able to eat purées. He couldn’t self-feed. He was nonverbal. He couldn’t climb stairs or jump. The only sounds he produced where grunts. He spent his days pacing the room and flapping his hands. He was diagnosed with Autism and – finally – someone was willing to listen to our feeding concerns.
Jack’s developmental pediatrician and his therapy team listened to us, and we got names for what we were seeing – Oral Phase Dysphagia, which is a neurologically-based lack of coordination of the chewing and swallowing mechanisms, and Sensory Processing Disorder. Jack literally didn’t have the muscle tone in his facial muscles to chew foods, he couldn’t manipulate foods in his mouth, he couldn’t coordinate his chewing with his swallowing, but this was all assuming that we could get the food in his mouth in the first place because he was so defensive. In many ways, it was vindication in that I was not a failure as a mother, but my heart sank at knowing that my little boy had such a long road ahead of him.
Fast forward to now…I just gave birth to my second son 8 weeks ago. My one fear – even more than him having Autism as well – was that he would have similar feeding problems as his brother. That has not happened. My new baby Andrew nurses like a champ.
As for my sweet Jack, he works harder than any person I’ve ever known. He is an inspiration to me each day. He now speaks, though he still has a significant speech delay. He can eat foods that are either very crisp, like crackers, or bready foods. He eats about 6 foods consistently and several others intermittently. He will continue to require feeding therapy for years, but he is making slow yet steady progress.
If there is one thing I could pass on to others about feeding concerns, it would be this – go with your gut and trust your instincts. If you feel like you child is truly struggling with feeding, don’t let doctors or anyone deter you from looking into it further. Contact Early Intervention services in your county for an evaluation, or get your child evaluated by a feeding therapist. With therapy, many children with feeding issues can expand their food repertoires, learn to enjoy eating, and become more proficient eaters.
Editor’s note: Does your child have a sensory processing or neurological challenges? Do you feel that has that impacted your feeding experiences? Sometimes breastfeeding problems aren’t breastfeeding problems but actually indicators of something else. I’ve heard from several moms of the last 4 years that have tried everything in addressing their breastfeeding struggles only to discover years later that there was (seemingly unrelated) neurological issues. From somewhere on the autism spectrum to high sensitivity, they have wondered if there is a connection. Maybe baby refuses to latch or latches all the time and overwhelms mom with constant breastfeeding. While it may be something else entirely, some moms do see there is a connection later on when their child is older.
I would love to hear from you if this has been a part of your journey, please comment below, share your thoughts, and if you’d like your story to be included on the website, please email firstname.lastname@example.org. Thank you all so much!