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The Story of Zoe

I was over 35 years, at the time of conception, so we felt the amnio was imperative, if only to know what challenges might lie ahead. I live in Texas and all the test that TX requires, through the amnio, were performed. We passed, no worries to speak of. Our child was "normal".

My pregnancy was basic, with no complications, until the 35 week. At my bi-weekly visit my blood pressure was slightly elevated, so my Dr. requested I come back in one week, just to monitor my pressure. Well, at that 36 week visit my blood pressure was 220/110 and my Dr. suggested I be admitted, strictly for a 24 hour monitor. Within 4 hours of my admission for "monitoring", the Dr. recommended that labor be induced. Of course, my baby was not ready to be born and was beginning to show signs of stress, so after 24 hours of trying to provoke labor, my baby was taken by cesarean section.

Zoe Bella, was born at 36 weeks and weighed 4 lbs. 15 oz. She scored a 7 at 1 minute and a 9 at 5 minutes on her "Apgar's".

She was born on December 31st, one month before her due date. I was determined that she would be a breast fed baby, and the nurses in the hosp. did not comply with my wishes, they were bottle feeding her, and not telling me. Consequently, I was in a great hurry to leave this hospital. We were released within 48 hours of her delivery and went home, 50 miles away from the hospital were she was delivered. Unfortunately, we still had not settled on a pediatrician and finding a Dr. during this time was impossible. 

We came home and relaxed, as much as we could, and the night of Jan 2. proved to be a difficult one. Zoe cried and cried and cried, and we tried to console her, as best we could. She was our only child and at our late 30's age, we drew on any experience we had with a "newborn" baby, but she seemed quite unhappy and we weren't sure what we should do. She wasn't thrilled about nursing and was basically irritated, she wouldn't even consume the Glucose Bottles we brought home from the hospital. During the day on Jan 3. she wanted to eat, less and less. I was lucky to have met with a Breast Feeding Consultant at the hospital and she kept in touch with us that first day home. She recommended we take Zoe to the hospital, just to be sure she wasn't becoming dehydrated. 

We decided to head to the hospital but I wanted to try to feed her before we went, so I was in the process of getting her to "latch on", and she collapsed in my arms. I knew something wasn't right and went immediately to my husband, he grabbed her and told me she wasn't breathing and to call 911. Her heart had stopped, as well. My husband performed CPR on her until the paramedics got there and proceeded to intubate her. She only needed this for a few seconds and then, was breathing and functioning on her own.

The ambulance drove us to the nearest hospital, about 25 minutes away, and she crashed again in the ambulance and had to be intubated, again. The next time we got to see her, she was laying on the bed in the emergency room with someone "breathing" for her. She was so tiny.

Once they stabilized her, she was moved to the PICU, she had an enlarged heart, enlarged liver, enlarged spleen and collapsed lung. She was placed on antibiotics as soon as she was loaded into the ambulance, so it was hard for them to tell if she might have incurred a bacterial infection sometime during her 48 hours outside the womb.

For two weeks her symptoms ranged from enlarged organs to collapsed organs and she seemed to respond to nothing. She remained on life support and under sedation. The Dr. on duty kept advising us that this may be a "SIDS issue" and we may never know what caused it. We should prepare for the worst. We may not have Zoe to stay. 

We were, however, blessed to have come to a "teaching hospital", where there was a PhD on staff. He requested she be tested for a few different metabolic disorders, among them was "biotinadase deficiency".

You see, he had been in Chicago, under a Dr. there in 1987 and had seen a baby with similar symptoms, that was diagnosed with BD. He was sure BD was what is was, but needed urinalysis to know for sure. One week later the results came back and she was given biotin, within 24 hours of receiving the biotin she was off life support and in a less critical hospital room. She was home within a week and a few days of being diagnosed and receiving Biotin.

Had we not been at the hospital we were, I believe we would not have our little girl, now.

She had suffered hypoglaucemia, because of the metabolic disorder, which caused her brain to starve for sugar, have a stroke, and shut her body down, at three days of age. 

Unfortunately, the area of the brain that was starved for sugar died. The area that died controls vision, and fine and gross motor skills. Fortunately, she was only three days old and the possibilities are unknown. We just have to watch and see if her brain can bypass this area and generate synapses in other areas. 

She is developmentally behind, but our state has a good program of "in home" therapy from birth to 3 years, and she is enrolled in this program.

She had been diagnosed with a form of strabismus and was prescribed a patch to help correct the weak eye (in her case both). She wore a patch from the age of 3 months to 24 months and at our 24 month visit, we were told that her problem is a neurological issue and that patching should be discontinued. There is still a chance that she could lose vision in whichever eye is the weaker one. Only time will tell, if Zoe's vision will be functional, as well as her other motor skills, but we are just taking one day at a time.

We incurred thousands of dollars in medical bills, as well as our insurance carrier, that could have been avoided with a simple test, which our state doesn't screen for.

I am worried, because this is such a rare disorder. Her pediatrician knows nothing about this disorder, and none of the medical persons we have encountered do, either. Do you see specialist? Do they test his urine to be sure his metabolic rates are where they should be? If so, how often does this happen?

Please let me know how to join this group and I how I may contribute.

Sincerely,
Cindy White 

Thank you,
Cindy White 
Texas

 

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