Extraordinary Breastfeeding: A CBSNews.com Producer’s Story

Last week CBSNews.com ran a wonderful video on the Challenges of Breastfeeding, and we issued a challenge to our readers to send 100 letters to CBSNews.com thanking them for “getting breastfeeding right.”   (If you haven’t yet, please send an e-mail to CBSNews.com using this link telling them you loved the video and want to see more, especially on how to Beat the Booby  Booby Traps!   All moms deserve to achieve their personal goals without being undermined, whether they decide to breastfeed for 2 weeks, 2 months or 2 years, or not at all.) 

We got a letter from CBSNews.com Health Senior Producer Mike Wuebben thanking us for our letters and our blog post, and Dr. Jen Ashton blogged about it and invites your feedback and ideas, proving that positive recognition is an effective, complementary strategy for advocacy work in changing our breastfeeding culture.  Mike Wuebben also shared that his wife had breastfed all three of their children, including one under very difficult circumstances.  We asked him to share his family’s story.

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!



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23 Responses to Extraordinary Breastfeeding: A CBSNews.com Producer’s Story

  1. What a sweet story! Thank him for sharing it. I am so glad this little boy got to enjoy the wonders of mama’s milk.

  2. Heather says:

    That is a great story! I’m so glad that BfB shared it with us. You both should be super proud of yourselves…Your wife for sticking with it and you for supporting her! Your children are super lucky to have you both :)

  3. Lauren H says:

    This story reminds me so much of my story with our second daughter.

    I had nursed our first for 16 months. She self-weaned just two weeks shy of discovering we were pregnant with our second child. I thought I’d be able to nurse her.

    After a long labor and short delivery, she wouldn’t latch on. Within 30 minutes, an IBCLC was called for consult. The diagnosis? Cleft palate. Complete, bilateral, hard and soft. There was NOTHING up there. She could not nurse, and no obturator was ever offered to me. (An obturator will cover most clefts and allow nursing). I pumped for seven months, getting her through five surgeries including repair.

    She did nurse for a few minutes here and there but never enough to really do any nutritional good. We used the Haberman as well in addition to a feeding tube as we were not allowed to bottle feed her for more than 30 minutes or she would start burning more calories than she was taking in.

    Kudos to both of these parents for providing the best start to their little one and possibly one of the best physical therapies around for his facial muscles! What a terrific story indeed.

    Warmest,
    Lauren

  4. Laurel says:

    A very moving story! What a powerful, well-written testament to a mother’s love and the healing power of breastfeeding! I am certain that your wife’s determination to get Willem to the breast was the best physical therapy he needed. A child uses many more facial muscles when breastfeeding vs. bottlefeeding. Something you saw first hand.

  5. Roxanne says:

    Wow, here I am sobbing in my coffee cup. LOL. What a wonderful story. Thank you so much for sharing!!

  6. Elizabeth says:

    This is a beautiful story! Your wife is an incredible woman!

  7. foxy.kate says:

    What a wonderful story. I can’t imagine how difficult that must have been for your wife – that’s amazing that she stuck with it. What beautiful little boys you have!

  8. What an amazing story! I had no idea this even existed. He’s very brave and giving to share this with the world. I especially love hearing breastfeeding stories from the dad’s POV.

  9. Kara Dudley says:

    What a great story! Thanks for sharing!

  10. Bethany says:

    What an amazing story of love and dedication from your entire family. One should never discount the power of a supportive father on the breastfeeding relationship. My wonderful and loving husband has been a huge factor in my success with nursing my two boys. Thank you for sharing your inspiring story with the world!

  11. Laura Keegan says:

    I am in awe of your family. Thank you so much for sharing your beautiful story with us. Reading it, I feel privileged to see the incredible power of your wife’s love and devotion to her children — a power protected and strengthened by your support and adoration for your children and their mother. Your story is a testimonial to the fact that parents have unique abilities and knowledge of their children — a story I hope many parents read so that they have the opportunity to better understand their own gifts as parents and advocates for their children. And lastly, your story is a testimonial to the resilience of breastfeeding and babies’ amazing abilities that shine through when a mom believes in her baby and has her partner’s support and faith in her.

  12. Haley says:

    I have 2 children which I’ve EBF both. I’m sitting in the dr’s office trying to pass time and I ran across this article. What a beautiful, moving story. These tears are tears of joy!!

  13. This is a beautiful story! Thank you for sharing this! It is amazing what a mother can do for her child. I had never heard of this before. As someone who works to help mothers I am glad I am aware now. I hope the story reaches many many more!

  14. What a wonderful and inspiring success story! Thank you for sharing — your wife is an inspiration!

  15. Courtney says:

    What an amazing story! Mama’s determination and Daddy’s support and encouragement will get that little boy far in life!

  16. Jessica Ratkovec says:

    I am inspired and smiling after reading this story. It strikes me as odd that so few people commend the father for sticking by his wife’s side and supporting nursing his son.I have had a relatively easy time with nursing (with the exception of two painful times with yeast infection in breasts and baby) but even so I know for a fact I could not have succeeded without the support of my boyfriend. Whether it was bringing me a glass of juice and a grilled cheese sandwich after settling in to nurse our son (Again!) in the beginning or actually helping me nurse by holding onto flailing limbs so I could latch our son on or helping me to figure out how to use a breast pump he was invaluable! And is still there supporting us 9 months in to nursing. So good job to Mike and his wife!

  17. Beautiful, absolutely beautiful. My daughter had seizures less than 24 hours after her birth and was whisked away to the NICU after only one attempt to nurse. It was one of the best and worst days of my life. I pumped for 5 days (which is not fun when it’s your first child and your milk hasn’t come in yet) before I was finally able to nurse her (when she was awake enough to try). It took several days of tears and frustration to get her to figure out how to latch on, but, with the help of a shield, she was able to nurse happily for 13 months. If not for my mom’s support (as a lactation consult), my husband’s support, and the support of all the NICU doctors and nurses (who were completely pro-breastfeeding!) I think I would have given up. I’m so glad I didn’t though – it was so worth it to see the connection I made with my daughter every time she nursed.

  18. Debbie Page says:

    This is a great story. I will pass it on to my colleagues. I have not worked with a baby with Moebius Syndrome, but how wonderful that if I ever encounter it, I can say keep trying because it worked for Willem and might work for your baby.

    Thanks again for an incredible story.

  19. Kristen says:

    What a beautiful and inspiring story! Thank you so much for sharing it.

  20. Jenn says:

    Such a wonderful story. Thank you for sharing!

  21. Kathy Soler-Sala says:

    No doubt that nursing was early ,PERFECT OT for this little guy!!!!!!

  22. Amy says:

    Such a great story! Please thank them for sharing it with us, and let them know how that we admire them so much!

  23. Thank you for supporting your wife and for sharing your beautiful story!

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