Thanks for joining me! Here you will find our families journey towards answers resulting in our daughter, Bonnie Bridget Odgers current diagnosis of HIST1HE syndrome. As of 2018, we currently know about twelve individuals with this syndrome, including our daughter Bonnie. We will provide the latest updates on research, personal anecdotes and community outreach. Feel free to share any new information about this rare syndrome and encourage you to share this web site with other rare genetic disorders. Thank you for reading our story. Scott, Anna-Lisa and Bonnie Odgers
Good company in a journey makes the way seem shorter. — Izaak Walton
Entry #1: Her Story, My Words
Hurt. Frustration. Confusion. Joy. Courage. Love.
Six years ago, September 2010, we welcomed our tiny daughter, Bonnie Bridget Odgers. 5lbs, 9oz. She was perfect. Perfectly unique.
It was an incredibly long day and as I was taking a moment to lie on the couch and watch “Master Chef”, a sudden feeling in my belly came over me. I thought it was internal gas and I turned to my husband, “I just had the weirdest sensation. I feel like the baby farted or I did?” He turned to me and said, “let’s look it up.” It seemed kinda funny at the time.
As he approached the computer, I simultaneously stood up and immediately knew something was wrong. I was bleeding and cramping. I felt wetness, fear, concern and shock. I’m not supposed to go into labor for a few more weeks. I just had an exam today and the doctor told me so. I panicked. “Am I going to lose the baby? Why is this happening to me? What’s wrong? My husband looked up the possibilities. It could have been lots of problems: preeclampsia, early labor, internal bleeding. I couldn’t wait dammit! I wasn’t gonna wait to hear from the doctor and certainly wasn’t going to wait to “look this up”. With my mind already out the door and on the freeway, I yelled, “I NEED TO GO TO THE ER NOW!!!” Like any couple, we had to make fast decisions but they couldn’t come fast enough. Pain was flooding my lower extremities and I rushed back to the couch. My husband called the on-call doctor and left a message.
Within five minutes, the doctor called us back to say we better check Anna-Lisa out. It doesn’t sound like there is anything to be alarmed about, but just in case—bring her into the ER. If everything checks out, you will be released.
Quickly, we pack a bag which includes the bare essentials: toothbrush, toothpaste, socks, maternity underwear, sweats/sweatshirt, Ugg boots and the all important receiving blanket. I could barely think as I now had massive cramping which resulted in a hunch-back of Notre Dame walk. With cell phones charged, we leave our place at 10:20pm for Cottage Hospital in Santa Barbara, CA.
Every bump in the road (literally) hits me as if a prized fighter took another cheap shot. Breathing is labored and my anxiety increases. At 10:45pm we arrive at the ER. I tell the front desk what’s happening and they immediately grab a wheelchair. Within seconds, I am whisked away to the exam room with husband, Scott, in tow. Thankfully, he was by my side, holding my hand, telling me everything was going to be ok. (even if he didn’t know that to be true).
The emergency room doctor tells me to carefully get on the exam room bed so he can see what’s happening. Within a minute, he says, “Well, your water broke and you are in labor.” What? I said. That cannot be true! I just had my 37 week pre-natal exam and he said I was weeks away from delivering.”
“Well, all I can tell you is that you are now going to be admitted as you are in labor.”
Naturally, I was confused, but there was nothing I could do about this situation. Hoping the baby would be protected from any of this chaos going on in my head—I relented and was rolled into the maternity ward several floors up. This is not how I envisioned the labor process. I thought that I would have another couple weeks to prepare both mentally and physically for this joyous event. Just like life, you never can fully predict what’s in the future.
After many hours of horrific pain, sweating and exhaustion, I finally gave birth via unplanned C-section 40 plus hours later on September 9, 2010 at 4:05 pm.
It’s a GIRL! I was barely awake as my whole body was numb from the neck down. My husband brought this beautiful, tiny creature over and told me to turn my head. “It’s your daughter, honey. She’s beautiful—great job mommy!” Scott brought her back to the nurses for further tests and I was moved into the recovery room.
Bonnie and I spent four days in the hospital. Early. Exhausted. Exhilarated. Expensive? Broken thoughts circle my head, then some news.
A doctor (not mine) enters my recovery room. He introduces himself with a curt tone. “Mrs. Odgers?” Yes. I have been doing some tests on Bonnie before we release you. Yes. Your daughter failed her hearing test. It’s my belief that your daughter is hard of hearing, maybe even, deaf.
After that, I couldn’t hear him over my tears and audible cries. He dropped this bomb in front of me, then called for the nearest nurse to pick up the shrapnel. He left as quickly as he came in. Could I have imagined this? Was I in a waking nightmare? As if my traumatic labor lasting 40 hours wasn’t enough— I was devastated. Not only did my mom die suddenly just a few month before, but I had no family or friends surrounding me. Left alone with my wandering thoughts, my eyes swollen, red, blind.
The nurse rushed in, held me tight, wiped my never ending tears with an abrasive, hospital grade Kleenex. Rudolph the red-nosed reindeer would have been envious of my nose.
How could this be? I don’t understand? The worst was over I thought. The nurse just kept telling me not to listen to him, that many babies fail the hearing and are just fine with more testing outside the hospital. “You just make an appointment with an audiologist and you’ll see… She’ll be just fine.” It will all be fine.
HIST1H1E Syndrome 