“She breathed. She lived. She lives on with our Lord in Heaven. And our love for her and the memories of her perfect, meaningful life remain in our hearts forever.”
Eleanor Pakala, Trisomy 13, Appleton, WI, 5/30/2008 – 5/30/2008
Eleanor, our angel.
“Your daughter will have no meaningful life.” The consulting obstetrician callously spoke the words to us March 6, 2008. They’ll never leave us.
When our primary obstetrician found a two-vessel umbilical cord, bilateral cleft pallet, horseshoe kidneys, and a three-chamber heart during our routine 20-week ultrasound, he sent us to a high-risk/genetic counseling facility.
At this appointment, they found more physical anomalies that were “incompatible with life:” a hernia in the diaphragm, undeveloped portions of the brain, and a rocker bottom heel that indicates severe chromosomal disorders. That’s when we were told our daughter likely had full Trisomy 13.
We’d never heard of Patau Syndrome before. As we stared at the ultrasound screen, watching our precious first child waving at us, trying to comprehend what was being said, we just sobbed. “What can we do? Can we find a facility that will perform surgeries after her birth?” It was then we were told that termination was the best option since no doctor would operate on our daughter. She likely wouldn’t make it through the pregnancy, and even then, she’d die the first week. We chose to leave immediately without amniocentesis. I was angry. I was afraid. Afraid to know the truth. Afraid of the future. Afraid the doctor would purposely do something to the life I thought most precious and that she thought wasn’t meaningful — completely disposable.
After returning home to our own clinic to speak to my doctor, he assured us that we don’t know what God has planned. We decided to move forward with amniocentesis to have a definitive answer. Eleanor was diagnosed with full Trisomy 13. We spent the next 11 weeks loving her, sharing and enjoying every little and giant movement of hers. We prayed for a miracle.
And then we were granted our miracle. Eleanor was born May 30, 2008 at 31 weeks, weighing 3 lbs 11 oz. She had beautiful golden hair and soft, glowing skin. Every one of her grandparents and most of her one dozen aunts and uncles – and even great grandparents – held her after my husband baptized her. When everyone left the delivery room, she fell into eternal slumber in my arms. She breathed. She lived. She lives on with our Lord in Heaven. And our love for her and the memories of her perfect, meaningful life remain in our hearts forever.