A Personal Story from Mike Wuebben, Senior Producer, CBSNews.com Health and Wellness
That my wife would breastfeed our second son, Willem, was a no-brainer. Leslie nursed our son Benjamin for his first 14 months and except for a rough couple early days, it came very naturally.
In the delivery room at 10 in the morning, just a few minutes after Will was born, Leslie put him to her breast, but this groggy little kid wouldn’t latch on. Oh well. The nurses said he was tired and this was normal. After a half an hour she tried again. No latch. With a beautiful calm focus, Leslie tried again and again. Twelve hours later the nurses came and took the baby away for the night.
Bright and early the next morning they were at it again with no success. Nurses, the midwives, the lactation consultant all gave tips but nothing would work. About this time they were noticing other odd things about my son — Will was “floppy,” low muscle tone, had a funny cry, didn’t blink when tapped on the forehead. By the next day the staff looks of concern had turned to pity. We were told before leaving for home, there was something “not normal” about my son.
Leslie was pumping and using the Haberman feeder- a special bottle for babies with feeding problems. He would eat but still couldn’t suck. We saw specialists, therapists, neurologists, chiropractors and no one knew why he was unresponsive. It was possible, we were told, he could “snap out of it.” Or he might not.
My wife never gave up trying to nurse him and for weeks she would put him to the breast before resorting to the feeder.
Around this time we discovered online a rare disorder that might fit Willem’s symptoms- low muscle tone, inability to blink, suck, move the muscles of his face. It’s called Moebius Syndrome. The article was titled “Kids Born without a Smile.” I had hoped for that “snap” moment when he would become a normal baby and here I was reading about my son’s future with a lifelong disability. Then I read further and saw a golden lining: most kids with Moebius have normal brain function and normal life expectancy.
Finally we knew something. He couldn’t suck because he couldn’t move the muscles of his face. He didn’t react because his muscles were weak and he couldn’t blink.
And then the miracles started to happen. One day, my wife went to nurse him and he sucked. She held his little lips together and he managed to get something. He could do it. As long as he could have something to latch onto deep in his mouth he could use his swallow response to pull the milk out. As those muscles grew stronger we started to see tiny twitches in his cheeks. The few muscles he had in his face were starting to work.
Willem continued to nurse well after his first birthday without the use of feeders and other aids. Though late, he continued to hit milestones. At 15 months he started to talk. At 30 months he walked. He learned to drink through a straw (no small feat for someone who can’t close his lips).
I was mostly a bystander to all this. I got to watch the incredible power of a mother’s love for her baby. Leslie was determined to give Willem the same early childhood experience that came so easy to his older brother and millions of other children. I hope her story inspires other mothers who face difficulties nursing.
Willem turns five this summer and he’ll start kindergarten in the fall. He still receives a full regimen of therapies to work on his muscle tone and speech, but he’s a happy, healthy, funny little boy. And I’ve discovered that the doctor at the hospital was right, my son is not normal, he’s extraordinary.
Any other moms or Lactation Consultants out there who have experience with helping babies with Moebius Syndrome breastfeed, we’d love to hear from you! Please share your tips, links and resources!
