A Mom's Inspirational Cleft Journey

The Smile that Changed My World

ONE MOM'S INSPIRING CLEFT JOURNEYThis is a guest post from my friend, Lindsay Grenert.  Lindsay is not only a friend but someone who has deeply impacted my life as she introduced me to Rodan + Fields, the business that started my journey of self-development.  I never knew that working together would be so life-changing, but it has completely changed my outlook on life and turned my can’t-do attitude into a can-do attitude.  Lindsay has always been extremely positive amidst an extremely difficult and emotionally exhausting journey.  I admire her strength, commitment, confidence and optimism and I know her story will inspire you.

April 14, 2016, was the day I got the call any pregnant mom fears.  I was driving home from dropping my then 5-year-old off at preschool when my OB called me to tell me one of my test scores had come back higher than normal.  This was the beginning of our cleft journey.

We met with a geneticist prior to having an ultrasound to explore the possibility that our baby may have Spina Bifida.  The geneticist went over all the other possibilities of why the score could have come back higher than average. As my score was not super high, we went into the ultrasound having our fears somewhat calmed hoping for the possibility that the due date was off, or maybe there was a twin who had been reabsorbed into my placenta.  After 20 agonizing minutes, my MFM told me that the baby’s spine, brain, organs all looked spot on.  HUGE sigh of relief!  “But, your baby has a cleft lip.”  Silence.  A cleft lip? We had no family history, I had taken my prenatal vitamins, I was a healthy 34-year-old with two other healthy children.  What do you mean our baby has a cleft lip, I thought.  A frenzy of questions shot through my brain; What is wrong with my baby?  What syndrome does s/he have? What did I do to cause this?  What would others think of her? Yes, I am completely and utterly ashamed that last question even went through my head, but I will be vulnerable here!  

After two weeks waiting for some basic genetic tests to come back, we learned that our daughter’s cleft was most likely isolated…meaning there was no reason to believe it was part of a syndrome or larger disability.  I won’t say the rest of my pregnancy was without worry, grief, fear, and guilt.  But I will say the more I researched cleft lip and palates, the more confident I became that my baby was going to live a wonderful life despite having to go through a very long journey.  We settled on a cleft team made up of a plastic surgeon, a feeding specialist, speech therapist, orthodontist, and ENT close by (I will be forever grateful to live in a city with great medical care).  I researched (must be the teacher in me) and shared every piece of information I learned with those around me and began to feel very at peace with the diagnosis. 1 in 700 children is born with a cleft, making it the most common birth defect in the US…what an eye-opening statistic that is considering I had never met anyone in my 34 years who had a cleft (that I know of).

A mom's inspirational cleft journey

August 24, 2016, four long months after we had received our daughter’s diagnosis she came into this world three weeks early.  She weighed in at 6 pounds 12 ounces and was 20.75 inches, she had the most perfectly imperfect mouth I had ever seen and she was healthy.  HEALTHY, my prayers had been answered and we now had a HEALTHY baby girl to add to our family.  We had been told that NICU nurses and hospitals often aren’t equipped to treat babies with clefts, so we had armed ourselves with all of the recommended specialty feeders. Well, folks, my daughter is a Rockstar. For even though she essentially had no roof to her mouth (a complete cleft palate) and she had a bilateral cleft lip (an opening on each side of her lip up into her nose) this baby could eat on her own out of a specialty bottle and would not need a feeding tube.  She was born on a Wednesday night and we went home Friday afternoon with no NICU stay. Guess what? That fear and worry about what people would think melted away the minute this beauty came into the world.  I was proud of her, I wanted to show her off and teach the world how miraculous this tiny being was.

At 5 days old we visited her cleft clinic.  She was fitted for a NAM (neovascular molding device) and a nasal elevator, which she would wear 24 hours a day for 3+ months to position the tissue of her gums and lips into the correct spot and to stretch her columella (the piece of skin between the tip of your nose and your face).  E. and I traveled to her clinic 45 minutes away anywhere from 1-3 times a week to have her “hardware” adjusted.  My other kids spent evenings watching TV and eating pizza in the clinic waiting room.  My husband and I spent nights cleaning Polygrip out of our daughter’s mouth while she screamed, one of us held her down while the other removed and replaced the tape on her lip and cheeks.  These three months went by VERY slowly and were filled with frustration, exhaustion, and self-doubt.  I consumed a lot of wine during this time and cried often, but would I do it again? ABSOLUTELY!  If my struggles meant that our daughter could have one less surgery, be put under one less time, have to recover one less time, then YES, I would do it all over again.

At 3.5 months, E. got her forever smile. It’s been 10 months and I still miss that beautiful wide smile that she was born with.  It was different, it lit up her whole face and boy, did a lot of people fall in love with that smile.  When I first saw her after surgery I cried. It felt like a rebirth of sorts, an exciting end to one part of our journey, but I was also mourning. Mourning the fact that my tiny 10-pound baby had a lip and nose full of stitches and cried out in pain, mourning the fact that I didn’t even recognize her when they brought me to her, mourning the fact that she would never look again like she did at birth.  I had been told by other cleft moms that I would miss her wide smile, but when I was pregnant I focused so much on when it would be “fixed.”  What I learned is, it’s very hard to see something you love so much change. After a night stay in the hospital, E. went home and recovered fully and fairly easily from that surgery. We could breathe again. No more nights spent taping, no weekly trips to the clinic. I had also given up pumping after making it to her surgery which was my goal.  “She looks great,” “you’d never know she had a cleft,” “she’s fixed,” were some of the comments we got in the following months.  Funny how ignorant we all are.  Once someone looks normal they must be normal, right? I’ll say I probably would have thought the same before it was my child who was faced with this disability.  I wish I could say that was the end of her journey, but it was just the start.  It would be 8 glorious months until her second surgery, palate repair.  

A week before her first birthday E. went in for palate repair. Her amazing surgeon would create a hard a soft palate for her during this surgery.  He would connect three layers of muscle and tissue to create her palate…which is pretty freaking amazing.  For those of you who have never handed your child over to a surgeon, let me tell you, it is quite possibly one of the hardest things a parent must do and it does not get easier with experience.  Three hours later, we got to see our beautiful girl again.  The upcoming week would be the longest week of my life to date.  Our strong-willed daughter refused to drink (which who could blame her with a mouth full of stitches) and she earned us a week-long stay at the hospital.  During this time, I met other children who had been in the hospital for weeks, some… months.  Children with heart defects, cancer, babies born months prematurely.  I was humbly reminded of how blessed I am to have a child whose journey, albeit a hard and long one, is one that she will live to tell.  I think of those other babies, who are mature beyond their years every day and I remind myself that there will always be others who are traveling on a journey far harder than ours.  This grounds me and helps me to see the light even on the hardest of days.

E. is now a happy fourteen-month-old.  She loves playing with her brothers, reading books, going for walks, swinging and dancing.  She’s on the verge of walking, she squeals like a guinea pig and she laughs without reserve.  She will have her third surgery next summer to repair two fistulas (or openings) in her palate that formed from tension due to the severity of her cleft.  Her cleft journey will continue most likely through her early adult years and if I had to guess she will have upwards of 10-15 surgeries by the time she reaches adulthood.  Do I wish my child didn’t have to go through this pain, of course, I do, but this is her journey, part of her life story and I am determined to make sure she always has the tools she needs to navigate this path and come out a stronger person because of it.

I have learned that strength is not measured in the weight we can carry, but in the way, we choose to carry it.  I choose to be grateful that this amazingly strong warrior-superhero-princess was given to me.  She has been through so much in her short life, but she wakes up every morning with a smile on her face, guinea pig squeals and a sparkle in her eye.  She is ready to face the day with zest and happiness and I will do the same EVERY. SINGLE. DAY.

A Mom's Inspirational Cleft Journey

Lindsay lives in Texas with her husband and three children, ages 6, 4, and 1. In addition to being a full-time mom, she also works from home as a Rodan + Fields skincare consultant.  You can contact Lindsay at lgrenert09@yahoo.com.

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1 Comment

  1. Kathy Sullivan says:

    Such an inspirational story! Thank you for sharing your journey. It can only help others who are also struggling with a difficult situation. Wishing you and your family good health and happiness!

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