Emma was born on February 17th, 2004. She came at 41 weeks of pregnancy, 18 hours of labor, and an emergency C-Section. She did not want to come out! But once she did, she was a beautiful and happy baby weighing in at 6 lbs, 11 ozs, and 19 inches long. She had no hair, and big blue eyes. She was perfect in every way!

We didn’t know about Emma’s diagnosis of Septo-Optic Dysplasia until she was just over 2 years old. She had gotten the diagnosis of Optic Nerve Hypoplasia when she was 4 months old, however the two ophthalmologists we saw neglected to tell us that 80% of kids with ONH also have hormone deficiencies.

On March 23rd, 2006, we took Emma to the ER because she was dehydrated from a flu bug. When we got to the ER, we found out her blood sugar was 11 (a healthy level is anywhere from 80-110) and her sodium was also dangerously low. They hydrated her and got her blood sugar and sodium back up. The problem was that once they stopped, it would drop again. At that point, she went through numerous tests, including a spinal tap (which came back clean). We spent the night in the hospital because they couldn’t find out what was wrong with her. It was a terrifying ordeal. During the night, she had a few seizures, which we later found out were mini-strokes. In the morning, they decided to transport her to Phoenix Children’s Hospital because they couldn’t find any answers. I was thinking that she must be in pretty bad shape to be transported to PCH…that’s where the really sick kids go. Not only were we at PCH, but we were in the Pediatric Intensive Care Unit (PICU).

We stayed in the PICU for 5 agonizing days. They did so many tests on Emma, I lost count. I don’t even remember what they tested for, but I do remember some of the tests being sent to places like California and Texas. It would take days to receive the results of those. Emma had so many tubes and cords coming out of her little body. She had messy hair from a couple of EEG’s. She had bruised arms and legs from attempts at getting a good vein for IV’s. After a few days, Emma woke up more, she was able to eat again, sit up again, and eventually start playing.

I can’t speak for my husband, but I felt like I was in a daze. The days ran together and everything seemed blurry. It’s worth mentioning that I was 7 months pregnant at the time, which might account for the lapse in clear thinking and memory! Brett was a champ. He stayed with Emma every night at the hospital. I went home because we decided that since I am a very light sleeper, it was best I sleep in my own bed. After all, we had another child that I was caring for.

On March 30th, we finally got an answer. After the neurologist, endocrinologist, ophthalmologist, and pediatrician met, they all agreed Emma had septo-optic dysplasia. Of course neither of us had ever heard of it…it was completely foreign to us. To find out that Emma would need oral medicine 3 times a day, let alone a shot every night, was completely daunting to us. It was hard to comprehend. We learned how to give her the shots in the hospital, and how to take her blood sugar, as we’d do that a couple of times a day for the next 2-3 weeks. We learned all about adrenal crisis, and the signs of it. We learned about stress dosing and quick sugars! We learned it all from a wonderful nurse, Fran, whom I still email and call regularly to ask questions and get advice.

I know my head was spinning when we got home. But we did it…I got myself completely organized with a system for her medications. I got her emergency medications in a diaper bag, as well as an emergency kit for the car, stocked with quick sugars, snacks, and other necessary items.

It’s been 2 years since Emma’s diagnosis. And every day I thank God that Emma is still with us. I didn’t realize, at the time, how close we were to losing her. She is a happy and healthy little girl with a mild (in my opinion) case of SOD. Brett and I think of her condition as a life sentence, not a death sentence. God gave us this special little girl to teach us something, and she had done just that. She’s taught us love, patience, faith, trust, and how to give shots, and we are so blessed to have the privilege of being her parents!

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