Baby - CHARGE Syndrome - Gillespie Approach–Craniosacral Fascial Therapy

CHARGE Syndrome Child Improves with Gillespie Approach–Craniosacral Fascial Therapy

Dr. Barry Gillespie and his Gillespie Approach–Craniosacral Fascial Therapy treatments saved my daughter’s life. She was born naturally at home and slept and nursed peacefully for the first three days, and then everything changed.

She began to scream, and she screamed for 12 to 14 hours a day every day. She would turn purple and sweaty, gag and spit up. She arched her back and kept her hands in perpetual fists. She had terrible difficulty breastfeeding and needed to eat every 15 minutes followed by gas pains and horrible stomach spasms. She needed to be held and padded constantly requiring my husband and I to take turn wrestling with her while she arched and slammed her head into our collar bones until she finally passed out each night.

Even while asleep she squirmed, held her hands in fists, made loud bird-like noises and wore a look of perpetual misery on her face.

Learn About CHARGE Syndrome and How Gillespie Approach–Craniosacral Fascial Therapy Can Help in This Video

Baby Suffers from CHARGE Syndrome, Presenting a Number of Health Challenges

Through all this, we found out that our daughter has a genetic disability called CHARGE syndrome, which is a rare genetic disorder characterized by life-threatening conditions including complex heart defects, breathing problems, eating problems, hearing loss, vision loss and balance issues.

The gravity of dealing with such a prognosis and having to subject our little baby to medical procedures was difficult enough. But nothing compared to the misery that her disposition brought to our everyday lives. We began to feel isolated from everyone, like prisoners in our own home.

At 6 weeks old, when we could no longer survive this way, our midwife referred us to Dr. Barry Gillespie. I called his office immediately, and during our conversation he made me feel that someone finally understood what we were going through. He said: “I can help her. This is what we do.”

Baby Begins Treatment with Dr. Barry Gillespie, Creator of Gillespie Approach–Craniosacral Fascial Therapy

During her first treatment, when Dr. Gillespie rested his arms next to her little body, she opened her hand for the first time since she was born and wrapped it around his arm. The results after that first session were nothing short of a miracle.

In the car outside Dr. Gillespie’s office, she nursed peacefully for the first time ever and slept quietly for the ride home. Her skin color improved. And when I took her out of the car, she melded to my body, and I felt as if I was holding her for the very first time.

That same day, we saw her first smile. Unfortunately, those magical results lasted only a few days, and that began the roller coaster of CFT therapy. At each session, some of her symptoms lessened and some of them worsened. But Dr. Gillespie was constantly encouraging us to stick with the process and help me learn to trust that my daughter’s body did indeed have the capacity to heal itself with a little help.

Most babies require between five and seven sessions to receive full benefit from Gillespie Approach–Craniosacral Fascial Therapy. My baby required 12. It was a long and stressful road, but at that 12th visit, when Dr. Gillespie and his team determined there was no longer any strain left in her little body, everyone in the room jumped up, yelled and hugged in excitement.

Baby Experiences Improvements with Gillespie Approach–Craniosacral Fascial Therapy

From then on, the changes began slowly and subtly. She was nursing better and rarely had the gas bubbles, reflux and constipation. She was no longer purple and sweaty. It took a lot of effort, but she would smile sometimes and was able to nap every once in a while. She could be awake for longer periods of time without crying or nursing, although she still needed someone to hold her or interact with her constantly.

Then after about two weeks, the miracle that I have been too afraid to hope for began to unfold in front of me. I couldn’t believe the differences that I was witnessing in my child. It was as if the entire world had suddenly opened up for her, and she couldn’t wait to interact with it.

She began taking naps, sleeping well at night, waking up happy, cooing and gently batting at my face. She was nursing calmly and deeply, and then going long periods of time awake and content, even playing by herself.

Suddenly, her hands were no longer fisted and she was reaching out to grab for people and faces and toys. Even though she is significantly visually impaired, her eyes stopped rolling, and she suddenly couldn’t get enough visual stimuli. She was locating and tracking lighted toys, paying attention to black and white targets, and even tracking her brother, running across the room.

Her skin tones started to look healthier, and she was happy. She was constantly laughing and smiling and became ticklish in responding to games like peek-a-boo.

Baby Breaks Through with Motor Development After Gillespie Approach–Craniosacral Fascial Therapy Sessions

Her gross motor development blossomed out of nowhere. She started rolling over, pushing up on her elbows and hands, holding her head up in the air. Her body was truly healing itself as she was achieving unimaginable cognitive neurological development that she might have never attained without Gillespie Approach–Craniosacral Fascial Therapy. She was already far surpassing the expectations of those professionals who had judged her potential capabilities only by the diagnosis of charge syndrome.

When she was 5 months old, roughly one month after she completed Gillespie Approach–Craniosacral Fascial Therapy, she had a renal ultrasound to recheck her previously diagnosed condition called hydronephrosis, or dilated kidney. Meeting with the urologist, he said, “I can’t explain it exactly, but her hydronephrosis is gone.” When she was 6 weeks old, her right kidney had been three times as large as her left, and her ureters had been horribly stretched and twisted. The urologist was certain she would need surgery. After Gillespie Approach–Craniosacral Fascial Therapy, both kidneys are now amazingly the same size, and her ureters were loose and straight.

Today, as we approach our little girl’s first birthday, she’s a wonderful part of our family and no longer a strain on everyone’s well being. We will never know how she would have developed without Gillespie Approach–Craniosacral Fascial Therapy, but she is blossoming and developing far past the expectations placed upon her by the most talented doctors with the fanciest children’s hospitals.

We were told she will be profoundly deaf and visually impaired, yet when she makes eye contact with her father, she smiles and says, “Daddy.” We were told she may take two to three years to crawl and four to five years to learn to walk. Today, she’s creeping upstairs, pulling to sand, scaling around on furniture, and sitting up on her own.

Our family will forever be grateful for the Baby Brain Score and Gillespie Approach–Craniosacral Fascial Therapy in giving us hope that our daughter deserved to be comfortable in her own skin, despite her genetic disabilities. Words can never express our gratitude to Dr. Barry Gillespie and his team for giving our family peace and happiness and providing our daughter a life not defined by her disability.

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Gillespie Approach Foundation Training is designed for students to work with children and adults.

  • February 1–3 | Austin, TX
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Gillespie Approach Infant Training is designed for students to work with infants.

  • February 4–6 | Austin, TX
  • March 17–19 | Gilbert, AZ
  • April 14–16 | Melbourne, FL
  • June 9–11 | Colorado Springs, CO
  • July 21–23 | Bozeman, MT
  • September 8–10 | Guildford, UK
  • October 20–22 | Nashua, NH
  • November 17–19 | Greenville, SC
  • December 8–10 | Philadelphia, PA

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