Mother’s Intuition Leads to Krabbe Leukodystrophy Disease Diagnosis

April 2, 2015

23-year-old Morgan was working as a caregiver for elderly individuals with Dementia when her life changed forever.

On November 12th 2013 Morgan found out that she was 5 weeks pregnant. She and her husband Michael were so in love and were overjoyed to share some of their love with their new baby! The couple was thrilled. In the coming weeks, the ultrasound revealed that they were bringing a beautiful baby girl into this world. Her pregnancy flew by as most seem to. She was very well read and wanted to know everything and anything about child birth and infants.

Morgan wanted to be mentally prepared for her life change. On July 20th 2014, she gave birth to her daughter. Caoilainn (pronounced Kay-O-Lynn) Nicole made her debut weighing 7 pounds 6 ounces. Morgan delivered via emergency C-section at 3:56am due to some complications she experienced during labor. As scary as that situation was, she said her life was forever blessed from that moment and filled with a love she had never experienced.

On July 23rd the two were released from the hospital and real life outside of the hospital walls began.

Caoilainn was perfect and had such a great personality and was extremely easy going. Morgan was involved in a breast-feeding group, and parenting classes in hopes of meeting parents with children her daughter’s age. From birth to four months old, Caoilainn was reaching all of the typical milestones. She was a happy child, growing accurately and was in phenomenal health. She slept well, and had a healthy appetite; she was an absolute dream. Shortly after she turned four months hold, Caoilainn’s sleeping patterns changed and she constantly wanted to nurse.

Between Christmas and New Years, Caoilainn interests changed. She was no longer interested in her toys and was refusing to lie on her stomach. Morgan understood that many children are not always a fan of tummy time, but the reaction when she put Caoilainn on her belly was a painful cry. The baby turned 6 -months-old and was now having issues latching on while being breastfed. It was as if she completely forgot what she had been doing for 6 months. She still hated being put on her stomach and had stopped rolling over. Morgan noticed that she was having trouble holding her head up.
On February 12th Morgan was completely fed up. She had been having lactation consultants come to the house once a week. She had taken Caoilainn back and forth to the emergency room and then to her pediatrician for answers. No one was listening. Every single visit she was just passed off as the concerned mother and reassured that children reach milestones at their individual pace and although there are standards, do not be alarmed, Caoilainn was just fine.

Caoilainn was weighed, it was discovered that she was losing more weight than was acceptable. She was taken to Loma Linda Children’s Hospital and expressed her concerns. Something was extremely wrong and she knew it.

Caoilainn was admitted for extreme weight loss and dehydration. Morgan was heard, blood work was drawn and an MRI was requested. After what seemed like endless poking, prodding and waiting, the MRI scans gave an answer. Caoilainn Nicole O’Donnell has been diagnosed with Krabbe Leukodystrophy Disease. This disorder is terminal and this family will be blessed if Caoilainn is with us on her first birthday. Most children with this disorder do not live past the age of two. In fact there is only a few documented cases noted in the world. This disorder is not tested for unless certain warnings arrive after the child is born. If this was caught before she turned 10 weeks old Caoilainn could have had a bone marrow transfusion or received cord blood and would have been given a normal life.

To learn more about Krabbe Disease you can visit Hunter’s Hope Foundation. 

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