The Journey of Eleanor Rose
Donation protected
On Wednesday, December 5, 2018, my husband and I had an appointment for our anatomy ultrasound. This type of scan tells you what your baby’s gender is (if you want to know) and takes many different measurements of your baby. We did not want to know the sex quite yet because we were having a gender reveal party with family and friends that following Saturday. After close to one hour of my scan, the ultrasound tech told us she was having a difficult time obtaining the outflow tracts of our baby’s heart. She had me roll to my side and use the bathroom, hoping our little one would move into a better position. Still no luck. We would need a follow up scan in two weeks.
On Saturday, December 8, 2018, we had our gender reveal party to find out we would be adding our sweet Eleanor to the family. Two days later, I made an appointment for the follow up scan. On Tuesday, my OB physician informed me, he was referring us to Maternal Fetal Medicine in Winchester for more detailed pictures of Eleanor’s heart. My heart sank immediately. Being a mom who works in the healthcare field, my mind quickly imagined the worst case scenario. My husband, on the other hand, was very calm in this time of need.
After a a very long six days, we arrived at our high risk ultrasound appointment. Two hours later, we obtained our results. Eleanor has Tetralogy of Fallot (Fuh-low). This is a rare condition caused by a combination of FOUR heart defects that are present at birth. According to statistics, there are fewer than 20,000 US cases per year. Eleanor has two large ventricular septal defects ( 2 holes in her heart), pulmonary stenosis (meaning not an adequate amount of blood is getting to her lungs), right ventricular hypertrophy (thickening and enlarging of the right side of the heart), and last but not least, an overriding aorta (enlarged and positioned incorrectly) that is pumping a mixture of oxygen rich blood and oxygen poor blood to the rest of her body. Eleanor will need multiple open heart surgeries to survive. Seventy years ago, this diagnosis would be considered a death sentence. Thanks to the advancements in medicine, she now has a 90% chance of survival.
All day and night, my husband and I screamed out of anger and cried out of pure sadness. What were we going to do? Did we even have options on a treatment plan? The next morning we called the doctor and told her our concerns and worries. Within 90 minutes, she had us in her office meeting with a genetics counselor and the pediatric cardiology team from the University of Virginia. They spent two hours explaining her case to us and what surgeries will be required for her survival. On top of the heart defects, there is a 30% chance of Eleanor having a chromosomal disorder, 22q11.2 deletion syndrome, also known as DiGeorge syndrome, which varies drastically from mild effects to serious intellectual and auto-immune deficiencies. There is also a small chance of her having Downs Syndrome or Trisomy 18. As of right now, Eleanor is not showing signs of any of these conditions but, we will not know for sure until she is born.
If Eleanor’s condition stays the same, she will need an open heart surgery when she is 4-6 months old and then again in her later teenage/early adult years. If her condition worsens before she is born, she will need open heart surgery when she is 1-2 weeks old, then again at 4-6 months of age, and again as a late teenager.
Any donations will be spent on Eleanor’s medical expenses, travel costs, and or lodging. Any further available donations will be given to St. Jude Children’s Research Hospital and the Pediatric Cardiology Department at the University of Virginia Hospital.
We come today to ask for prayers for our daughter, Kyleigh, my husband, myself, and most important, our sweet Eleanor Rose. Thank you all.
On Saturday, December 8, 2018, we had our gender reveal party to find out we would be adding our sweet Eleanor to the family. Two days later, I made an appointment for the follow up scan. On Tuesday, my OB physician informed me, he was referring us to Maternal Fetal Medicine in Winchester for more detailed pictures of Eleanor’s heart. My heart sank immediately. Being a mom who works in the healthcare field, my mind quickly imagined the worst case scenario. My husband, on the other hand, was very calm in this time of need.
After a a very long six days, we arrived at our high risk ultrasound appointment. Two hours later, we obtained our results. Eleanor has Tetralogy of Fallot (Fuh-low). This is a rare condition caused by a combination of FOUR heart defects that are present at birth. According to statistics, there are fewer than 20,000 US cases per year. Eleanor has two large ventricular septal defects ( 2 holes in her heart), pulmonary stenosis (meaning not an adequate amount of blood is getting to her lungs), right ventricular hypertrophy (thickening and enlarging of the right side of the heart), and last but not least, an overriding aorta (enlarged and positioned incorrectly) that is pumping a mixture of oxygen rich blood and oxygen poor blood to the rest of her body. Eleanor will need multiple open heart surgeries to survive. Seventy years ago, this diagnosis would be considered a death sentence. Thanks to the advancements in medicine, she now has a 90% chance of survival.
All day and night, my husband and I screamed out of anger and cried out of pure sadness. What were we going to do? Did we even have options on a treatment plan? The next morning we called the doctor and told her our concerns and worries. Within 90 minutes, she had us in her office meeting with a genetics counselor and the pediatric cardiology team from the University of Virginia. They spent two hours explaining her case to us and what surgeries will be required for her survival. On top of the heart defects, there is a 30% chance of Eleanor having a chromosomal disorder, 22q11.2 deletion syndrome, also known as DiGeorge syndrome, which varies drastically from mild effects to serious intellectual and auto-immune deficiencies. There is also a small chance of her having Downs Syndrome or Trisomy 18. As of right now, Eleanor is not showing signs of any of these conditions but, we will not know for sure until she is born.
If Eleanor’s condition stays the same, she will need an open heart surgery when she is 4-6 months old and then again in her later teenage/early adult years. If her condition worsens before she is born, she will need open heart surgery when she is 1-2 weeks old, then again at 4-6 months of age, and again as a late teenager.
Any donations will be spent on Eleanor’s medical expenses, travel costs, and or lodging. Any further available donations will be given to St. Jude Children’s Research Hospital and the Pediatric Cardiology Department at the University of Virginia Hospital.
We come today to ask for prayers for our daughter, Kyleigh, my husband, myself, and most important, our sweet Eleanor Rose. Thank you all.
Organizer
Emily Penwell
Organizer
Maurertown, VA
