Morgan
VON HIPPEL-LINDAU SYNDROME
Destination: Miami
Travel Year: 2024
My Story
In moments my entire world had changed. During my 20-week prenatal visit, my OBGYN admitted me to the hospital and sent me in for a Brain MRI because my symptoms were way past normal pregnancy symptoms. After the MRIs and a bunch of tests were completed, I was informed I had a large tumor on my brainstem, with cysts all down my spinal cord, in my kidneys and pancreas. They diagnosed me with a rare genetic disease called Von Hippel-Lindau disease (VHL).
My family and I had never heard of it before and were completely in shock. My doctors informed me that pregnancy hormones intensify this disease which is why my symptoms had gotten as bad as they did. After my Brain surgery to remove the tumor, we were relieved that both my baby and I had made it successfully through surgery. But, I had a number of complications that kept me in ICU for four long months. My eyes were crossed, I was having throat issues that were causing breathing problems and a lot of numbness in several places. A little less than a week later I caught pneumonia, and my lungs gave up and wouldn’t oxygenate.
“I was placed on ECMO, which is a type of life support that did the work for my lungs by oxygenating my blood. I also had a tracheostomy done and was connected to a ventilator. While on ECMO, our baby, Catie, passed away unexpectedly and for unknown reasons. I had to have a c-section the next morning. We were all completely devastated.”
My Health
Daily Challenges
- Vision issues (double vision + eye shaking)
- Vertigo
- Larynx spasms
- Coughing fits
Ongoing Health Issues
- Breathing problems
- Sleep apnea (damage from surgery)
- Nerve pain from spinal cyst
Major Procedures
- Brain surgery
- C-section
- ECMO cannulation (twice)
- Tracheostomy
Total Surgeries: 5
Each person diagnosed with Von Hippel-Lindau Syndrome experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.
To learn more about Rare Genetic Disorders, click below.