NRL News

Parents choose life for daughter diagnosed prenatally with cancer and Down syndrome

by | Sep 28, 2015

By Nancy Flanders

abigail5On August 6th, Erika and Stephen Jones welcomed their second daughter into the world. But as joyous of an occasion as it was, it brought with it a bit of fear and uncertainty. Baby Abigail had been diagnosed prenatally with not one, but two health conditions.

At their 18-week ultrasound, the family was told there was strong likelihood that Abigail had Down syndrome. A follow-up blood test proved that she did.

“Initially, we were shocked and scared, mourning the loss of a ‘normal’ baby,” wrote Mrs. Jones in a blog post. “But God quickly worked on our hearts and His peace surpassed our fear. We were soon very excited and honored to have a child with special needs.”

But as their fears were lifted and they began to accept the diagnosis of Down syndrome, doctors had more news for them to take in. The 30-week ultrasound revealed a mass growing in Abigail’s brain. It was a rare cancerous tumor that was replacing the baby’s brain matter.

“Our hearts were broken and our minds weighted with questions and fear of the unknown to come,” wrote Mrs. Jones.

As the pregnancy progressed, so did the tumor – and doctors offered little hope.

“Leaning on the grace and perfection of our God, we knew little Abby’s life had a purpose, no matter how long or short it was,” explained Mrs. Jones. “We pray continually for her healing, but our faith in God was/is not based on Abigail’s healing. God is not a god that responds to our plans and how we want things to work out. Our faith is in the loving Father that His plans are bigger than ours and those plans will bring people to eternity. Sometimes the things He needs to bring others to eternity may cause us to walk through tremendous pain but we need to focus joy of the eternal and not the pain of the temporal.”

Because the mass had grown so large, Abigail was born via C-section. Doctors told the family that she might not live long after birth, but Abigail has done well enough to be able to go home.

Her tumor is not treatable because of how aggressive it is, and chemotherapy could kill a baby her age. In addition, doctors would not be able to remove it all with surgery. Abigail is at home with her parents and big sister with the help of pediatric hospice.

“This situation is tragic and unbelievably difficult,” wrote Mrs. Jones. “[…] We don’t want to lose our daughter. We want to see her laugh, dance, fight with her sister, ride a bike, go to school… we want to see her life. […] Our hearts are broken and ache for the time that we don’t have. We stand on this – our God is good.”

Abigail likely has just weeks or months to live. But her family is spending that time loving her fully, knowing that her life has value and meaning. Enjoying her for every moment she has and every second they are given.

Editor’s note. This was first published in and is reprinted with permission.

Categories: Down Syndrome