Adalyn's Story
Adalyn was born on 10/4/12, she was 5 lbs 12 oz and 18 in long. She is our second baby girl and her big sister Eila, who was 2 when she was born, loves her so much! As does everyone in our family! And now, Adalyn is a BIG SISTER, she has a little Brother, JR!
Adalyn was diagnosed with Lissencephaly, which is a rare genetic brain disorder. She was diagnosed at 4 days old when she was having difficulty in the hospital.
At first, Adalyn just had some trouble feeding and then started having other problems with breathing and seizure like symptoms. She was airlifted to Dartmouth Hitchock Medical Center in Lebanon where they did an EEG and a MRI. The MRI showed that she had Lissencephaly, which is diagnosed by having a smooth brain. The folds in her brain did not form completly and she has excess fluid in her head. Genetic testing showed that she has Lissencephaly Miller-Dieker Syndrome. This was the result of chromosome 17 and 3 being affected.
After all the testing and a gastrostomy tube (feeding tube directly in the stomach) being put in, we finally took our baby girl home at 14 days old.
Adalyn had two forms of seizures, clonic-tonic that started when she was 3 months old and infantile spasms that started when she was 4 months old.
In September 2013, Adalyn's breathing issues became more severe. We found out that she constantly aspirates (anything that goes down her throat goes into her lungs) and this has caused pneumonia. She battled pneumonia at least five times. She was now on continuos oxygen and it was beginning to be difficult to take her to appointments or out of the house.
In January 2014 we entered Adalyn into a Pediatric Home Hospice Program through our local VNA. We knew it was important to have quality time with Adalyn and our family.
Adalyn Rose became an angel on February 26, 2014. She passed away peacefully, in the arms of her parents, and surrounded by family.