This case study was the super ultimate test for the Baby Brain Score and CFT. The typical quality of life issues of that present for many parents were monumentally magnified in this story because of the severe birth trauma and genetic complications. You may have seen the six-minute movie on YouTube. Now read the book! Even though the mother tells her child’s story in great detail, it is well worth the read.
–Dr. Barry Gillespie
My daughter’s story begins at home, where she was born breech, frank (pike position), and posterior (facing backward) after a short but arduous natural labor and delivery. She had an extremely short umbilical cord and was very swollen at birth, so much so that her right eye couldn’t open. Four days later at A.I. DuPont Children’s Hospital in Wilmington, Delaware, doctors told my husband and me that she was born with bilateral birth defects of the eyes called colobomas and microphthalmia. Colobomas are holes in the back of the eye, and micropthalmia signifies underdeveloped eyes. The doctors said that she only had a 20% chance of having sight.
Four weeks later genetic testing revealed our daughter had CHARGE syndrome. This is a recognizable genetic pattern of birth defects, which occurs in about one in every 10,000 births worldwide. These babies are often born with life-threatening conditions, including cardiac, breathing, swallowing, hearing impairment, vision loss, and balance issues.
For the moment we were much more concerned about her day-to-day quality of life issues. She screamed and cried constantly. She would get so upset that she would turn purple, sweat, gag, and eventually collapse in total exhaustion in my arms. She would then lie peacefully for about 30 seconds before screaming again. My husband, my son, and I were all stressed and exhausted from dealing with her miserable temperament. When extended family and friends tried to provide some relief, they too felt helpless.
She had torticollis (restricted neck muscles) and constantly held her head to the far right side. Her hands were perpetually in fists. She took forever to latch on to nurse, popped on and off constantly, and never ate peacefully. She would nurse just enough to survive and then return to screaming, while needing to eat again 15 minutes later.
She spit up constantly, had gas and painful stomach spasms, and fussed before and during her bowel movements. She slept well at night, but after her third day of life, she never took another nap. She would wake every morning at 4 a.m. and scream her way through the day until she passed out from complete exhaustion around 4 p.m. Even when she slept, she was never peaceful, holding her hands in fists, squirming, and making loud bird-like noises. As difficult as all this was, what really broke my heart was the perpetual look on her face of pure misery, as if she were bearing the weight of the world on her tiny shoulders.
We consulted every pediatric specialist (geneticists, urologists, ophthalmologists, radiologists, cardiologists, audiologists, oculoplastic surgeons and more) from A.I. DuPont Children‟s Hospital and Children’s Hospital of Philadelphia (the #1 ranked pediatric hospital in The United States). They all did a wonderful job of assessing her rare conditions, but no one could treat her quality of life issues or offered any hope for their improvement.
Shortly before she was six weeks old, I called my midwife in desperation. I couldn’t go through another day of the powerlessness of watching my daughter suffer. She told me about a former client who described a doctor doing craniosacral fascial therapy for infants, which had radically changed her son’s life. My husband and I called Dr. Barry Gillespie immediately. I told him what my daughter was going through, and he simply said: “I can help her. This is what we do.” It was such a simple statement, but I will never forget it. We drove one hour and 40 minutes one way to his office while my daughter screamed the entire time.
During our initial appointment, Dr. Gillespie first asked questions about my pregnancy and her birth, and then he examined my daughter. He gently held her head and tailbone and then told me she had a brain cycle of zero seconds. Luckily, I had an idea of what that meant since I had read his information. Otherwise, as a new mother, I probably would have fallen into a puddle of tears, grabbed my daughter, and run out of the room at the sound of “brain” and “zero” in the same sentence. Yet, I stayed the course as I truly felt this was my daughter’s only chance at some peace.
Throughout the session Dr. Gillespie treated her for a few minutes and then gave her a rest. After the second treatment, she was laying with her head by his chest, his arms outstretched at her sides with his hands by her hips. As I stood up to get her, she reached up, wrapped her arm around him and grabbed his arm with her little hand. It was the first time I had ever seen her open her hand.
Dr. Gillespie said, “Look, we’re friends.” At the time, we couldn’t have known just how long and intense our experience together would be and how fond of each other my little girl and Dr. Gillespie would become. Yet, somehow she knew what a difference this man was about to make in her life.
By the end of the session, she was very hungry and quite overheated. Dr. Gillespie came outside to say goodbye to us, as her distress was so loud the office staff couldn’t maintain their normal phone conversations. I sat down in my car, ready to nurse her before the long trip home. I felt a familiar rise in my body temperature and anxiety level that I would feel whenever she needed to nurse. I braced myself for the screaming and shrieking, popping on and off, the tight fists and arching, and the 60-90 difficult minutes just to get 10-15 minutes of actual nursing. I offered her the breast, and she latched right on. Her body became still, her sucking was rhythmic, and I had a sudden flashback to nursing my older son. This is what it is supposed to feel like.
She nursed for 30 minutes until she eventually slowed and drifted off to sleep. I couldn’t believe it. My mom placed her in her car seat, and we drove home in silence. Looking in my rear view mirror, I saw a completely different child. Her face was relaxed, her hands were open, and she was asleep during daylight hours for the first time since her third day of life. Her skin color improved, and for the first time in her tortured life, she smiled. My husband returned home from his trip to a completely different child. After that 3rd day, she slowly began to regress, and the effects of her first treatment started to diminish as Dr. Gillespie had warned us. There was still more craniosacral fascial strain in her body that had to be released.
Dr. Gillespie and his colleagues, Kristen and Michael Myers, worked in a small room in a dark basement of an Amish Natural Food Store in Bird-in-Hand, Pennsylvania. Every Wednesday morning the reception area was filled with about 20 Amish mothers and their babies of different ages and stages of treatment. They all had distress and quality of life issues such as difficulty nursing, reflux, colic, constipation, gas, and poor napping. Word had traveled around the Amish community that this was the place to be for fussy babies.
That day, Mike was doing an intake with a new mom who was obviously exhausted, and her baby was almost as unhappy as mine. Another baby “graduated” by completing treatment; this infant was the only quiet and content baby in the room. The Amish surroundings were plain and simple; they do not even have electricity to operate indoor lighting. This environment reminded me of how I imagine medical care and healing existed over a century ago.
That second visit was close to my cultural expectations but a far departure from anything I had experienced medically. My daughter had seen so many doctors and had so many high-tech hospital tests; this was the first time I wasn’t anxious about getting worse news or a more dire diagnosis. So much had been done to her and for her, that I was so excited to be switching the approach by having professionals assist her body in naturally healing itself.
During a particularly terrible day after that visit when I had been up since 4 a.m. with a screaming, head butting baby, I called my husband at work in tears. He e-mailed Dr. Gillespie to ask for help. He called me at home, calmed me down, and explained that this activity was normal. Babies can have many layers of trauma in their bodies, and there is an ebb and flow to authentic healing.
At another private session Dr. Gillespie said my daughter was in the top three most restricted babies he had ever seen. It was sad to hear that, but he reassured me that my instincts were correct that this was not normal baby angst. She did much better after that third session. She had her first period of quiet/alert time (awake without eating or screaming) and was able to turn her head to the midline.
Thus, the Baby Day roller coaster ride began. Every Wednesday I made the hour-long commute to Amish country excited, yet apprehensive. I wanted her to continue to get better, but I was always nervous that she might end up worse symptomatically. At the fourth visit, Kristen and Mike were ill so Dr. Gillespie was flying solo. At this visit the fascia in her throat was very tight. I remember being glad that at that point I trusted Dr. Gillespie. She was crying so hard as he worked on her throat that her whole face would turn purple. When the fascia released, she would slowly calm, and the color would return to her face.
She had a great nursing session thereafter and then was contently cooing at her brother on the way home in the car. The following week her positive nursing behavior continued, her reflux was reduced, and for a few days she even slept until 7 a.m., 3 hours later than usual.
During her fifth session, fascial strain in her right eye was originating from her severely restricted right kidney. Dr. Gillespie pulled me aside and asked if any doctor had examined her kidneys. Just the previous week, we had consulted with an urologist who discovered a dilated right kidney (hydronephrosis) and severe renal reflux. If I had not already believed in this approach, that insight would have sealed the deal. I could not fathom that Dr. Gillespie picked up on a severe kidney condition in an obscure Amish basement with no medical testing that took our urologist lengthy and expensive ultrasound imaging to discover.
After that therapy session, her status was a mixed bag. She continued to nurse well during the day and had less gastrointestinal distress. Yet, her reflux worsened, her night nursing was terrible, her torticollis pained her, and her sleep schedule was still unsettled (no naps and only sleeping between 4 p.m. and 4 a.m.).
During session six, they felt a craniosacral fascial strain pattern from her pelvis through both kidneys into her right eye. Sessions six through nine were still a bumpy ride of full body therapy but to a lesser degree than the first few visits. Each of her many symptoms were a little worse or a little better after each session, but overall she was steadily improving.
At her ninth appointment Dr. Gillespie asked me to rate her overall function and temperament with zero being where we started and 10 being the ideal baby. I gave her a rating of 7. She had come quite a long way, and her father and I were becoming anxious to see what she would be like when the team completed CFT. We didn’t quite know what to expect.
When the tenth visit rolled around, she tolerated her session well, and nothing seemed out of the ordinary. Then she screamed the entire car ride home and continued until she finally passed out for the night from pure exhaustion. The next day, she had difficulty nursing, her stomach spasms returned, and her bowel movements became inconsistent. None of the symptoms were as severe as they were initially, but they were much worse than the previous month. I would have rated her overall function at a 4.
I wasn’t quite as devastated as I had been after her second visit, but I was becoming quite worn out by the process. I started to wonder if maybe she was the one baby where CFT couldn’t be significantly effective. Maybe this was the best we were going to get. I sent Dr. Gillespie an e-mail, and this was his response: From this last visit the core of her onion is in her right eye. The fascia holds the memory of all lifetime traumas. To finally clear that specific event so that the healing can begin, she has to go back to the exact moment of trauma, whatever it was. That can be a nasty time. I have seen this over and over at The Family Hope Center when the child would revisit the moment of brain injury in CFT, act out, and the parents freak out. But when this core strain cleared, the healing began.
My midwife joined us for the eleventh appointment when my daughter became the new record holder for most treatment visits. Dr. Gillespie said that her overall craniosacral fascial strain was still a high 9, which was unheard of this late in the game. Yet, she was finally presenting as most fussy babies do on their initial visit. I secretly hoped that this didn’t mean she would still need a lot more treatment. She did well after that visit and slowly but steadily all of her symptoms began to lessen.
At session twelve Dr. Gillespie placed his hands under her head and closed his eyes for a few moments as he always did. Then, they popped open, and he said, “Wait a minute I don’t feel any strain here. Kristen, do you feel anything?” She didn’t feel any strain in my daughter’s pelvis either. He said, “This just might be it,” and we stepped out to wait for her next session. When it was our turn again, the team checked her entire body out for strain. Dr. Gillespie said, “I can‟t believe she is finished!‟ All five of us, including my 3-year-old son, jumped up, yelled, and hugged in excitement as if our favorite team had just won the Super Bowl.
I was so thrilled that I called her father and my parents in the car on the way home to tell them she had graduated. Yet, in the quietness of the day’s end, I started to think about it more and began to feel slightly let down. I wasn’t quite disappointed, but I hadn’t known what to expect or what it would be like to have her be “finished.”
So, I went back through her health journal to remind myself just how far she had come. She didn’t scream all day long. She was nursing better and rarely had the gas bubbles, reflux, and constipation that had plagued her. 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, slowly but steadily the miracle that I had been too afraid to hope for began to unfold in front of me. I didn’t pick up on it initially, but then as I realized that our days seemed easier and as I was feeling more rested, I started paying attention to the small changes that had occurred over just a few days. When two weeks went by, 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, and 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, faces, and toys. Even though she is significantly visually impaired, her eyes stopped roving, 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 tracked her brother running across the room. Her skin tone started to look healthier, and she was happy. She was constantly laughing and smiling, and became ticklish and responded to games like peek-a-boo.
Her gross motor development blossomed out of nowhere. She started rolling over and 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 CFT. She was already far surpassing the expectations of those professionals who judged her potential capabilities only by the diagnosis of CHARGE syndrome.
When she was 5 months old, roughly one month after she completed CFT, she had a renal ultrasound to recheck her hydronephrosis. After the imaging, my husband and I met with her urologist. When he entered the room, he had a completely different tone than on the previous visit. He said, “I can‟t explain it exactly, but her hydronephrosis is gone.” He showed us the original ultrasound where her right kidney was three times as large as her left, and her ureters (which should travel straight from the kidneys to the bladder) were horribly stretched and twisted.
He had been very concerned that her ureters would kink, and she would require surgery. We saw on that day‟s ultrasound that both kidneys were now amazingly the same size, and her ureters were loose and straight. He was extremely excited as he told us that children rarely „grow out‟ of such a severe condition so quickly.
At 6 months of age she failed several auditory behavioral assessments and required a sedated test to determine her level and quality of hearing. Doctors gave her medication intravenously in her right arm. After she recovered from the procedure, she never quite returned to her old self. She was clingy, whiny, congested, and not sleeping well.
Four days after the procedure, Dr. Gillespie found some new fascial strain in her right arm connecting to her right eye. With just one treatment session positive results were instantaneous. While he was treating my son, she laid on the floor smiling, laughing, and content to play by herself. Her sense of well-being was restored, and she was able to shine in life with an unrestricted craniosacral fascial system.
Today, our daughter is a wonderful part of our family and no longer a strain on everyone‟s well-being. She is blossoming and developing, reaching out and rolling around to explore her world. She can go long periods of time playing with her brother or herself, which has allowed our household to function normally again. We recently attended a large family event, and all of my aunts were elated to be able to hold and interact with her. My son has been able to return to extracurricular activities, and I can take both children out with confidence that I can care for her properly.
Our family will forever be grateful for the Baby Brain Score and CFT in giving us hope that our daughter deserved to be comfortable in her own skin, despite her genetic disabilities. Words can never express how thankful we are for her to have the opportunity to be happy, to interact with her world, and to grow within it.
Dr. Barry Gillespie’s Comments
Since this was our most challenging baby, the Baby Brain Score and CFT were really put to the ultimate test. We recognized that she had many incurable conditions from CHARGE syndrome and the eye pathology, but we realized that she had important quality of life issues that needed to be addressed. Because of her severe condition, we did not specifically know what would improve and what would not. Our only goal was to help her body release as much craniosacral fascial strain as possible, allow it to heal as well as it could, and evaluate her response.
Effective communication to walk the parents through the entire process was critical. The physical trauma of birth can have a lasting effect on the connective tissue or fascia of the body. Research has shown that trauma can apply a pressure up to 2,000 pounds per square inch to fascia. At the moment of impact the fascia around the brain can recoil and tighten, immediately impairing how the nervous system functions. The fascia can then store this trauma for a lifetime until it is physically released. When the Baby Brain Score recognizes the effects of this trauma minutes after birth and CFT releases this restricted tissue, the body can loosen and regain normal function.
The child can also have dramatic ups and downs over the many weeks of treatment. We found in our research that a straight line of authentic healing at every visit did not occur. Their baby had a “miracle” first visit as the top layer of the onion peeled. But a nasty layer of old trauma surfaced on her second visit. Without parental education they might have perceived that we had done something wrong and stop treatment.
We did not see this baby until she was six weeks old. With the true Baby Brain Score, birthing professionals would have surely found a low value at birth. CFT would have commenced immediately and probably been completed in less than a week. One would have expected less treatment at birth, and most, if not all of the conditions that she eventually contracted, would have been prevented. We believe that the parents would have had a completely different experience with their daughter. This concept exhibits the phenomenal healing power in the hands of birth professionals worldwide.
Originally when we started working with infants, we thought that they might only need a visit or two for completion. We soon realized that they have their own onion of trauma over the nine months of fetal development and then the difficult birth process. After treating hundreds of babies, we found that the typical fussy infant required 5-7 CFT visits to completely peel his/her onion.
When I started CFT at the fourth visit, I carefully listened to her body. The craniosacral fascial strain took me to her throat, that area to be healed in that present moment. I was assuming that the infant’s body knew best how to heal itself. This was much different that trying to fix, drug, operate, cure, massage, or adjust her body. Even though it looked unusual to the mother, that process was what her body needed to do for correction. I trusted in her internal wisdom and just assisted in her healing. The fact that she nursed much better immediately afterwards and was a happier baby with her brother validated this concept. She knew better how to heal herself than I did; I implicitly trust that principle with every patient.
Most parents present their babies because of the immediate fussy problems of nursing difficulty, colic, reflux, constipation, gas, and sleeping issues. Even though the Baby Brain Score and CFT can be very effective for these conditions, it has two more important benefits. First, it can optimize cognitive brain function for a potential lifetime of neurological wellness. As a few weeks passed after her last CFT visit, her brain integrated the many positive changes. Her mother saw the results of excellent cognitive development, even with the diagnosis of CHARGE syndrome. Secondly, it can prevent at least 20 diseases like asthma, earache and headache later in life. As this child grows with healthy living principles and returns for checkup visits, we expect her to have excellent health throughout childhood.
The kidney aspect of this story is truly amazing. When this layer of her onion presented on the fifth visit, I felt an incredible strain in her right kidney that I have never felt in any other baby. It was so brutally fierce that I had to mention it to the mother. I remember later that day questioning God why such a cruel strain would exist in an innocent infant. The answer came with the fantastic unsolicited report from the urologist; CFT can help heal even the most challenging infant craniosacral-facial strain.
The craniosacral fascial system is a full body web of tissue that infuses into every structural cell of every organ. New research has shown that each cell has its own microfascial web that controls intracellular metabolism. The strain must have really impaired her right kidney because it had to expand three times normal size to function. Also, the same strain must have twisted the ureters.
The series of CFT visits gradually released the pressure from the urogenital system to normalize function. Her body knew perfectly how to heal itself in the proper therapy sequence without me even having any awareness of specific kidney pathology. That demonstrates the distinct difference between attempting to fix the problem surgically and healing the problem naturally.
When she had the intravenous procedure, the full body craniosacral fascial web was disturbed and became restricted. Her brain cycle diminished significantly. Since she had all of that previous CFT, one session quickly opened the system nicely to mitigate the new onion layer.
This story has three important lessons. The Baby Brain Score and CFT are critical pieces of every newborn’s well-being. The brain needs to breathe, and the fascia has to be free. Secondly, everyone has to honor and trust the therapeutic process. The body knows best how to heal itself. Lastly, everyone must be patient for the brain to heal. Instant healing is not an option for this complex organ. Healing is a process and not an event. The infant needs to fully integrate as the layers of trauma are unfolding in their own space and time.
In summary, there are no words to describe what this approach meant for the quality of life of this infant. The ultimate goal is for every newborn on the planet to have this same benefit. Then we believe that people will be happier and more at peace with themselves and the world.