Best for Babes

We found out about the CHASE Community Giving Contest from our friend Ingrid Harding, founder of Girl Power 2 Cure, an organization that raises awareness and research funds for Rett Syndrome, a severe developmental disorder affecting primarily girls, caused by a gene mutation and frequently misdiagnosed as the most severe type of autism.  Girl Power 2 Cure also engages girls in caring for their girlfriends with Rett Syndrome-how awesome is that?   I asked Ingrid to share her story because she is my hero and she inspires me every day.  I don’t know if I would have continued breastfeeding if my baby had arched her back and rejected the breast (and me).   If my child was diagnosed with Rett at age 4 I am not sure I would have the strength to carry on, day after day.   Every 90 minutes, another girl is born with Rett.

Thank you Ingrid, for urging us to enter the CHASE Community Giving Contest, for sharing your and Sarah’s amazing story, and for being willing to speak openly about breastfeeding.   We need more disease foundations looking for a cure to acknowledge the incredible power and benefits of breastfeeding, and encourage expecting and new parents to breastfeed or use donor milk, in their list of ways to prevent or ameliorate disease, as they already do with exercise and eating healthy!   Every day we hear the messages of cancer, heart disease, and diabetes foundations, on the news, in the cause-related marketing products we buy, in the races we run and walk.  Imagine if all of those foundations’ messages even had a small but consist statement supporting breastfeeding in a non-judgmental way; not only would they be helping their own cause but they would help to normalize breastfeeding and ensure that the 360 degree world surrounding expecting parents reflected the importance of making healthy decisions starting with birth.  

If you haven’t already, please go to Facebook.com and vote for Best for Babes  and for Girl Power 2 Cure - two of very few organizations in the contest that are women’s causes!      

Ingrid Harding’s Story, Founder of Girl Power 2 Cure

Ingrid Harding, founder of GirlPower2Cure.org, and daughter Sarah

Recently I’ve started to think of our bodies as trekkers, endlessly pushing forward step by step, in a powerful rhythm.  We all carry different loads.

 My daughter, Sarah (age 9), was diagnosed with Rett Syndrome at the age of four. Her load is heavy. She lost the ability to walk, speak or even use her hands…. yet her core is still pushing forward in its own powerful rhythm.

 Would I ask her to also carry a pack of cement bricks? Maybe tie a log to her ankle? Throw a pot of water up on her head? No. I need to lighten her load. Protect her. Give her every chance in the world to use what is working to stay alive, to keep pushing forward and staying strong.

Even before she was born, I had thoughts like this. Even though my body seemed to tolerate a lot, why ask my baby to? Why not keep the load light for her?

There are many things we do to keep Sarah’s load light.  Most important is her diet.  We stay away from things that are difficult to digest, like gluten and dairy, and potential allergens, like nuts.  We also avoid food dyes and artificial ingredients – all things healthier bodies could process . . . but at what cost to our overall health?  We have a whole-house water filtration system, to reduce the burden of chemicals in the water used to bathe Sarah, and in the water she drinks.   We do our best to eliminate all toxins, even those that she could process, but at the expense of moving forward with her powerful rhythm.

I am so thankful I chose to breast feed Sarah. She nursed exclusively for five months.  Even though I had no idea what troubles would soon come her way and breast feeding was not going to stop it, I can look back and know that I gave her a strong start.  Breastfeeding was not easy . . . looking back now I can see what may have been early signs of Rett Syndrome . . . and I am so glad that despite the breastfeeding obstacles we faced, that I did not throw in the towel in the first few weeks.  I believe it made a difference in Sarah’s connection to us, and her immune system strength.  It was the beginning of keeping her load light so she could achieve her potential despite Rett Syndrome.

You see, when you can’t talk and explain what ails you, you scream and cry… a lot.  We learned very quickly that digestion / pain / immune strength were all interrelated. It’s like an on/off switch with Sarah.  Quiet for good digestion. Scream for bad.  That in turn could lead to pain which would lead to lower immune function.

Sarah is strong for a girl with Rett Syndrome . . . a strength she will need to hold out for the cure (see below).  I can’t say with absolute certainty that our light load is the reason why, but I wouldn’t trade our path on this trek for any other!

More about Rett Syndrome:

Another little girl is born with Rett Syndrome every 90 minutes. It is the leading genetic cause of severe impairment in females, yet so few women know about it.

It strikes at random. Any expectant mother is at risk for having a daughter with Rett Syndrome. The girls and women have symptoms of every neurological disorder for their entire lives. Most girls cannot walk, talk or use their hands. They are mentally aware, yet trapped inside dysfunctional bodies.

The good news: in 2007, researchers were able to REVERSE the symptoms in mice, making Rett Syndrome potentially the first curable neurological disorder. With enough funding, we may see a cure within 5 years. 

Imagine that it could be a women’s disorder, Rett Syndrome, that will pave the way and shed light on dozens of other disorders bringing us closer to a cure for things like Parkinsons, Alzheimers and Epilepsy.

Do you have a child with Rett Syndrome?   Did you struggle with breastfeeding a baby with severe developmental disorders?   We’d love to hear your 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!