On Saturday, November 22nd in the evening hours, Bridget went into labor and was admitted into Methodist Hospital. Labor progressed smoothly through birth, and Afton Jane was born at 12:45pm the following day. She was 7 pounds - 7 ounces, 21 inches, and seemingly healthy and well. The initial exam with the staffed pediatrician went well. Even in the capacity of her limited knowledge of Bridget’s pre-existing heart condition, her assessment was positive. This however, we were prepared to take with a grain of salt, because we had already lined up a pediatric cardiologist at the Children’s Hospital to assess the tests on Afton’s heart. Our orders were to have the specialist receive the test results as soon as possible after birth. Upon reviewing the data, the specialist was concerned enough to have Afton transferred to his hospital to be monitored.
The first day at the Children’s Hospital things went well. However that evening Afton suffered a respiratory-arrest and would not start breathing again on her own. She lost consciousness, and the doctors were unclear what was happening to her, or how to awaken her. She was immediately put on life-support systems and medication to regulate breathing, heart functions, and nutritional intake. At the same time, testing swiftly began to try and find a reason for her condition. The next morning, the doctors had test results showing unusually high levels of a couple things — one was an abnormally high ph level in her system, and the other was a high amount of ammonia. The ammonia lead the doctors to suspect a failure in the metabolic system, and it was decided to have Afton transferred again, this time to the Children’s Hospital at the University of Minnesota, where an area renown specialist in metabolic systems was located.
Upon arriving at the new location, we were greeted by an amazing group of doctors and staff. The first step, as immediately as possible, was to lower the levels of ammonia in her body. For this they had introduced medication, however the only proper way to make a true attempt at lowering the levels as fast as possible was to use a process called continual-dialysis. In this process, the blood is continuously syphoned from the body, scrubbed, and put back into her. She would continue on this process until her ammonia levels dropped to a normal level, and we were sure would remain stable and at healthy levels. That night, the dialysis worked very well at removing the toxins, and by morning, her ammonia level was within the confines of normalcy. This was key, because the faster the toxins are removed from the system the less damage it can do to the body. Throughout this process, she continued on life-support machines and medications to regulate her bodily systems.
Now that her ammonia levels were seemingly stabilized, the focus shifted. We needed to find the reason why her body had produced toxic levels of ammonia in the first place. This was the task of a brilliant specialist in the area of metabolic processes. She had already initiated many labs that she would use to find the root of the problem. With the specialist’s direct contacts at the Mayo Clinic, and the Department of Health, the labs were fast-tracked, to expedite the finding of the solution.
In the meantime, Afton’s body started to show some light signs of recovery, as she started showing physical reactions to some touches, and involuntary movements in her extremities. Her responses to stimuli and her physical activity seemed to be slowly increasing, which is very positive.
The metabolic specialist then told us that she had determined the diagnosis. Afton possessed a rare genetic defect in her metabolic system that, when breaking down certain kinds of proteins, the process went awry at the last phase of metabolism where ammonia is converted into urea (urine). When the human body is sick or under stress, it looks to protein stores in the body to metabolize into food to use as fuel to combat its condition and heal. Afton’s body cannot (by itself) successfully break down those proteins. The result was a build up of toxins (ammonia), causing more stress, and the cycle snowballs. This condition can be mediated, with a specific diet and medication, and with that knowledge her body has recently began to be intravenously supplemented with proteins that her body can process.
At this point, we are unclear how much damage her body has suffered. But, with the factors that cause the damage eliminated, we have reached a phase of healing. We don’t know how long this process will take, nor do we know to what extent it will progress. Our main concerns are for a full recovery of her heart and brain functions. Slowly, specific life-support systems are being weaned, hopefully allowing her to breath without the help of machines, and let hear heart function without the help of regulating medicine. Unfortunately, at this point Afton needs time, so we will need to be patient and wait to learn more.
