Ella’s Story

Ella was born February 9, 2003 in Baltimore, MD at the Baltimore Birthing Center. My pregnancy was wonderful, I felt good and my sonograms showed that Ella was healthy and growing. I was one day shy of two weeks overdue when I went into labor. My labor was long and hard when Ella was finally born there were major complications, she was purple and not breathing. The midwife placed Ella on my chest and told me to stimulate her by rubbing her back and talking to her,  I handed Ella back to the midwife saying, “Something is wrong. Please help her.” I don’t remember much after that, I went into shock. The midwife, student midwife and assisting nurse began working on Ella trying to get her to breath. My doula was trying without success to call the hospital and have them send a neonatal transport team, she didn’t know how to get an outside line. My husband Dave ended up calling 911 on my Mother-in-law’s cellular phone. After what seemed like an eternity, Ella’s skin began to pink up. The paramedics arrived and took her and my husband to the hospital. I was left at the birthing center until I stopped bleeding and to receive stitches where I had torn during the birth. I didn’t arrive at the hospital until 6 hours later.

When I finally arrived at the hospital Ella was in the Neonatal Intensive Care Unit and I was told she was in very critical condition. After three long grueling day of tests on Ella, I was finally able to hold her.The moment was wonderful, then the doctors told us she was having seizures and had severe brain damage. “What does that mean?”, I wondered.  We had no time to really think about that. I was producing milk and Ella needed to eat. I tried over and over to get Ella to latch and breast feed, she wouldn’t, she just cried and turned away. I cried and sprayed milk all over her face. We were told that she would require a feeding tube and would most likely use one for the rest of her life, if she lived. Nurses inserted a nasal tube which went through her nose and into her stomach. We put my breast milk in a large syringe attached to the nasal tube  and held it above her head letting the milk pour in, a gravity feed. This was extremely frustrating because if Ella was crying (which she always was) it would push the milk back up in the tube. These feeds would take over an hour and we needed to do them every three hours. All of Ella’s vital organs recovered except for her brain. We were told that we could take her home on the nasal tube as long as we learned how to insert it ourselves and bring her back in a few weeks to have a gastric tube surgically placed in her belly. I never thought I would be able to place the tube in her nose and we had to prove it to the nurses before they would release her. Somehow I did it with my hand shaking, tears running down my face and the NICU nurses cheering me on. We took Ella home at three weeks not really knowing what to make of the doctor’s gloomy predictions. A couple of months later, she was diagnosed with spastic quadriplegia cerebral palsy and we were told she would never walk or talk. The spastic form of Cerebral Palsy is characterized by abnormal control of voluntary limb muscles and by exaggerated reflexes, quadriplegia is a form of Cerebral Palsy in which all four limbs are affected. The muscles are stiffly and permanently contracted. Making movement awkward and difficult to varying degrees depending upon severity.

A week after we brought Ella home I was sitting in the park with my friend telling her about Ella’s feeding issues and how I really didn’t want to have the gastric tube placed in. A woman tapped me on the shoulder and told me I needed to contact Diane Chapman-Bahr http://www.oral-motor.com/, a local speech therapist. She said I guarantee she will have your daughter sucking in three weeks.  I called Diane immediately and she saw us the next day. She taught me a series of oral massage exercises http://www.beckmanoralmotor.com/ that I was to do every three hours along with trying to feed Ella with a special needs bottle http://en.wikipedia.org/wiki/Haberman_Feeder . We did our work, kept positive and three weeks later to the day Ella was sucking and the gastric tube surgery was canceled.

This began our journey of healing and recovery. If we could teach Ella to suck and feed what else could we teach her to do? And how do we get her to sleep???

Sleep…Ella would not sleep. Ever. I couldn’t figure it out– how is she doing it? I need sleep and so does her Dad , this is crazy. For the first couple of months we had lots of people coming into our house to check up and help Ella–a nurse, an occupational therapist and a physical therapist. It never ever failed whenever someone was coming to see Ella she would fall asleep right before they came. We would wake her so the nurse could check her vitals or the therapists could work with her. Finally, I got to the point where I told them they would have to come back at another time because she needed her sleep. The nurse and the OT agreed with me, but the PT got very angry because it was messing up her schedule. I had trouble with this PT from the beginning, I felt that she was very negative. I told the PT not to return and called the company she was from to ask if they could send another PT in her place. The day the new PT arrived before I let her in my door I told her that she must be positive or she could leave right now. She said she was the most positive person around. She was, we have remained close friends today. We love you Amy! Amy suggested we get Ella into a warm pool for her therapy sessions. I was up for anything, Ella cried through all of her therapy sessions so anything was better then what we were doing. My Mother and I took Ella to the first session–someone had to come with me whenever I drove Ella anywhere because she cried so hard in the car seat we were worried about vomiting and aspiration. We got to the pool and I was a mess–sleep deprived and crazed from listening to a screaming baby. I put her bathing suit on and handed her to Amy, Amy and Ella walked down the stairs into the pool and Ella stopped crying. It was amazing—she liked it, I think she might be smiling. She spent an hour in the pool with Amy, floating, kicking her legs a little bit and loving it. I took her home and she slept for four hours in a row that night.

During my sleepless nights I devoured information on the internet about brain injury recovery. I found MUMS a national parent to parent network for parents of kids with special needs www.netnet.net/mums/. MUMS advocates Hyperbaric Oxygen Therapy for brain injury.

Hyperbaric oxygen therapy (HBOT) is the inhalation of 100 percent oxygen inside a hyperbaric chamber that is pressurized to greater than 1 atmosphere (atm). HBOT causes both mechanical and physiologic effects by inducing a state of increased pressure and hyperoxia. HBOT is typically administered at 1 to 3 atm. While the duration of an HBOT session is typically 90 to 120 minutes, the duration, frequency, and cumulative number of sessions have not been standardized. HBOT is administered in two primary ways, using a monoplace chamber or a multiplace chamber.

The idea is that the pressurized oxygen can “wake-up” dormant brain cells. Parents have reported that after HBOT treatments their children have less spasticity, improved eye movement, more vocalizations and BETTER SLEEP!!

I found a center in Lancaster, PA http://hboxygen.freeyellow.com/ an hour from our house in Baltimore, MD. We got the OK from Ella’s pediatrician and booked Ella for 40 treatments. I drove up to the center everyday for 40 days for the one hour treatments. Most days someone would drive up with me to help out with Ella in the car seat–there were a few days when someone couldn’t make it and I would go up alone with Ella. These were the hardest days–Ella would scream the entire hour, I would cry and feel like driving my car into a ditch (the beginning of a deep depression.) Our treatments were done in a single chamber, Ella and I laid on a gurney and were slid into a large clear tube. The tube was sealed and the oxygen was pumped in, at the beginning and the end of the treatment our ears popped just like going up in a plane. I always took a bottle in the chamber with me to feed Ella and help with her ears. She never seemed to mind the treatments, music was pumped in or you could watch TV. Right away I noticed that Ella was eating more and gaining weight–so was I. I was starving when I got out of the chamber and there was an Arby’s right next to the center. I had a beef and cheddar and curly fries everyday for 40 days! Ella was also sleeping better not at night all the time but she was sleeping. Her eyes started to focus and come down–Ella always looked up and to the right. Now she would look at us and hold a gaze for a few seconds. Her spasticity also decreased, however after we finished the treatments the spasticity returned. After Ella’s treatment cycle was over Dave and I began looking into buying a portable chamber and attended the HBOT conference in Florida. A few years later we did buy one. We had a huge fundraiser where all of my friends from the dance world came together and put on a show and silent auction to help pay for the chamber.

I met many other parents of kids with brain injury at the HBOT center lots of them were doing an intense sensory stimulation program with their children called Brain-Net (very similar to The Institutes for the Achievement of Human Potential program for brain inured children http://www.iahp.org/Brain-Injured-Children.203.0.html.) Brain-Net was located in Bridgewater, England about 6 hours from London. I called the center and we flew to England over the Thanksgiving holiday to meet with the Brain-Net team.

BrainNet was a stimulative program based on THREE major principles:
- INTENSITY
- FREQUENCY
- DURATION
All three elements must be equally present in everyday exercises.
INTENSITY means that we have to work at least 6 to 8 hours a day with the child we stimulate, and it must be done in such a way as to define the exercises which would be on the top of her abilities. The exercises are mostly short, lasting a couple of minutes each, and they are heterogeneous.
This stimulates the child’s brain in all aspects of development (motor exercises, speech, palpable, visual and hearing centers.)
FREQUENCY means constant repetition of the same stimulus to be finally registered and adopted by the brain. In practice, that means that an entirely same series of exercises is done two or three times a day, then 5-6-7 days a week (according to individual abilities).
DURATION is: the above mentioned intensity and frequency of practicing, distributed within a long period of time.
The BrainNet programme is based on the experience and belief that the brain nerve cells could be regenerated and taught, and that they can overcome most of the restrictions which the brain injury created (genetic or mechanical). To say it briefly: Function – Determines – Structure.

We spent 5 longs days working with the Brain-Net team learning exercises for Ella in the 4 major aspects of the program: breathing and masking, nutrition, patterning, and intelligence. Returning back to Baltimore a week later we were ready to go to work. For the breathing and masking, we masked Ella every 8 minutes for one minute while she was awake. Masking is said to help increase the lung capacity and increase oxygen flow to the brain. All of the sudden my life went in 8 minute increments—if that wasn’t enough to drive you crazy, the rest of the intense program would. We learned some very valuable information on nutrition and the needs of a brain injured child. For intelligence we made flash cards of everything in our life: people, toys, places we go and anything else you could think of. On one side of the card was a picture and on the other was the word in big red letters. We presented these flash cards to Ella 6 times a day along with giving her many tactile opportunities: hot and cold, soft and hard, bumpy and smooth and on and on. Then there was patterning—we did cross pattering with Ella six times a day for five minutes at a time. We needed three people to pattern Ella so three times a day we had volunteers come to our house and help with the program. Ella hated the patterning and would scream the whole time! UGH!

We did this program for about nine months.  The Brain-Net team was so impressed with our family and dedication that they asked us to travel to South East Asia to meet the families that they worked with in this part of the world. We packed up and went to Singapore and Malaysia for a month and a half. We stayed with and met so many wonder families–this was an incredible opportunity for our family.

Upon our return to the US we decided to sell our house and move in with my Mother in Law, my husband had stopped working and was helping me with Ella full time. My depression was getting worse and I was having a very hard time dealing with everything.

We evaluated Ella’s progress after nine months on the program, she was benefiting from all aspects of the program except for the pattering. She continued to scream the whole time and wasn’t making any strides with mobility which pattering was suppose to help with. Her spasticity seemed to be getting worse and she never seemed comfortable. Then I found a program in Montreal, Canada–Advanced Bio-mechanical Rehabilitation (ABR.)

ABR is a method of structural correction of musculoskeletal deformities. It is a hands-on method performed by the parents who learn the ABR technique and individual prescription of applications from ABR professional staff. http://www.abrcanada.com/english.html

My mother, Ella and I flew to Montreal and checked in to a lovely Ronald McDonald House in the heart of the city. The following day Ella was evaluated by the ABR inventor a stoic, extremely brilliant Russian mathematician Leonid Blyum. Right away this felt right, Mr. Blyum took over three hours to explain the structural problems in Ella’s body. He could tell us exactly how the ABR therapy would affect and change Ella’s body and the order in which these changes would occur. Dave joined us on the third day of our stay in Montreal and we spent the next two days learning the ABR technique. The hands on therapy was to be done by Dave and me for four hours a day seven days a week. We did our work and returned to see the ABR team four months later in Montreal. All of the changes that Mr. Blyum predicted happened, Ella’s body was changing.  She was also much more comfortable, not crying as much, sleeping better and her spasticity was relaxing.

Around this time I also took Ella to see Jennifer Downs, an acupuncturist in Baltimore. We were told that acupuncture may help Ella with sleep. I took Ella to the appointment and Jennifer said, “Of course we can work with Ella, but Julie, I think you may be the one who needs this more at this time.” My Mom took Ella for the afternoon, my first appointment took 3 hours, we talked, I cried and screamed, and then Jennifer did a drain on me putting needles along both sides of my spine as I lay on my stomach. It was incredible–I could feel my body calm, like I was getting back to my baseline. When I picked Ella up at my Mom’s house that afternoon something was different I noticed this beautiful baby with an amazing soul. I held her to my body and she calmed –it became so apparent how deeply connected Ella and I are. I needed to stop running around chasing a cure for her and appreciate the gift that Ella is. I continued to see Jennifer until we moved to Vermont and every time we visit Baltimore I always make sure that I get an appointment to see her.

At our next four month appointment to see the ABR team we decided to go a satellite clinic in San Jose, CA. We went out a few weeks earlier so we could attend a Yoga for the Special Child program in San Diego and then drive up the coast to San Jose–an amazing and life changing trip. (See Yoga and Healing) ABR was working, Ella’s body was changing, she was sleeping better and seemed happier. When we returned to Baltimore it was the fall and my husband was considering returning to school to get a degree in Physical Therapy. He needed to take some classes in Anatomy to apply for the programs. We decided to move into my Mother-in-Law’s beach house in Ocean City, MD, Dave took classes at Wor-Wic Community College and I enrolled in a yoga teacher training program in Delaware http://www.silverlotustraininginstitute.com/. Dave began applying to PT programs all over the country. The University of Vermont was one of the first programs Dave was accepted to, we loved Vermont when we visited on our way to the ABR clinic in Montreal. I had a cousin and Dave had a friend that he grew up with that lived there— AND we were only 1 1/2 from Montreal, making the 4 times a year trips much easier.

So, we moved to Vermont. Dave and I flew up one weekend in April to look for a place to live. We hooked up with a great real estate agent Ellen Zdyb http://www.ezvermontrealestate.com/ . Ellen listened to the needs of our family, taking us all around Burlington and the surrounding areas, we ended up buying the first place she showed us. A beautiful condo with a park behind us with trails that lead to Lake Champlain, really close to the bike path, beaches and downtown, great neighbors and the best school EVER for Ella. We moved up in June and started enjoying the Vermont summer. Dave started school in the fall and we never saw him. The program was very intense and Dave was very dedicated, however he missed us as much as we missed him. He decided to stop the program to focus on Ella and all of her therapies. He is now Ella’s para-educator in kindergarten–he says the best job ever!

Ella’s school is very supportive of our family,  Ella’s unique needs and our decisions on how we handle Ella’s care. She uses a pink Dynavox computer for communication http://www.dynavoxtech.com/Default.aspx.  We love her teachers and the administration at the school. The kids in her class are very loving and kind to Ella and always want to include her.

As far as therapies go, Ella sees an OT and PT, I do yoga with her, we do a few hours of ABR and she sees a craniosacral therapist http://www.stillpointmassage.biz/. We decided as a family that we need to be a family that enjoys each other, plays on the weekends and cuddles at night. We spent many of the early years so worried about getting therapy hours in and feeling guilty if we didn’t reach our weekly goals. By taking each day at a time we’re able to assess what Ella needs, sometimes that’s therapy, sometimes it’s playtime and sometimes it’s sleep.

Our journey is far from over challenges present themselves each and every day. Dave and I respect one another giving the space and the time we each need to work out, do yoga, meditate or read a book– always trying to stay balanced and keep Ella as healthy and happy as she can be.