All photos courtesy of Jessica Veal
Cover image and photo designs by Kaylenne (@handwritten.hope.studio)
From the outside, Jessica, Riley, and their little girl Madeline look like the perfect family. You would never know that just three years ago, they were overwhelmed by a grave medical diagnosis for their unborn baby. The frightening news ushered in a season of wrestling between doubt and faith, hope and despair. Could they continue trusting God with their daughter’s life, no matter what He saw fit to give and take away?
At that time, life was good for the young couple—they had just gotten married and settled into a new life together in beautiful Boise, Idaho. Then unexpectedly, Jessica discovered she was pregnant. A baby this early in their marriage wasn’t according to plan, but after the surprise wore off, they felt joy.
They began to make adjustments to welcome this new little one into their family. They found out it was a girl, and decided to name her Madeline Rose.
Then an ultrasound around Jessica’s 20th week of pregnancy revealed some concerning abnormalities in their daughter’s brain. Doctors scheduled one MRI, and then a second. Results this time were clear—their little baby had a severe brain disorder, and parts of her brain were missing. Brain scans of Madeline’s head showed dark shadowy areas where there should be light-colored brain tissue. While the rest of her body was growing normally, parts of her brain were unformed in this critical stage of her development.
First came shock, and then questions. How was this caused? What treatments were available? And what effect would this have on their little girl?
“Your baby might not make it.”
Through many more tests and doctor visits, they received some answers. The doctors believed Madeline had agenesis (complete absence) of the corpus callosum and the cerebellum, Dandy-Walker variant. There was no cure, no way to “grow back” the parts of their daughter’s brain which were missing. All they could do was wait, hope, and pray.
As to what effect this disorder would have on their daughter, doctors could only provide a vague spectrum of potential symptoms. The possibilities ranged from a normal, healthy baby to a child with profound disability, who potentially could not walk, talk, or care for herself.
“We didn’t know what that meant; no one in our family had special needs,” remembers Jessica. “We were overwhelmed. Pretty soon after we got the diagnosis, the midwife walked into the room and said, ‘Your baby might not even make it.’”
While Riley tried to remain optimistic, Jessica found herself in a place of doubt and questions. This baby, though unplanned, had clearly been a gift from God. She trusted His timing more than her own and had been excited to love and cherish this little one. But how could she trust God when excitement for this wonderful gift had turned to pain and mourning for the things her daughter might never experience?
Riley and Jessica continued meeting with doctors. Over the next few weeks, they would receive several offers to terminate the pregnancy with an abortion. But despite their grief, they made the choice to trust God with their daughter’s life.
“We didn’t even consider abortion, because we knew she was our child, and she was a gift from God,” said Jessica. “Even if we didn’t know she was going to make it, we still wanted to give her a chance at life.”
Grappling with the Unknowns in Faith
Grueling weeks passed, full of questions, occasional tears, and fear of the unknown road that lay ahead. Not knowing exactly how their daughter would be affected and what kind of challenges she would face was exhausting.
“I didn’t know if I would be able to go back to work after she was born, or if I would need to stay home and take care of her,” remembers Jessica. “I didn’t know if she would be able to live on her own some day, or if we would always have her with us. Sometimes people would say, ‘God is good,’ and I would think, ‘Yes, he is good, but this doesn’t feel good right now.’”
Jessica struggled between keeping hope alive and resolutely preparing for the worst-possible scenario. And although her husband was steadfast in his hope for a good future for their daughter, the burden of the unknown at times felt too much to bear. But two things did not change—the love she felt for her daughter, and the trust she had in God. “Even if she doesn’t make it, even if she has special needs, we’re still going to love her,” Jessica remembers thinking.
In moments of fear, she reminded herself that God was in control of her daughter’s development. At the beginning of her third trimester, Jessica captioned her latest ultrasound photos with this reminder from Psalm 139:13-16:
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
God knew all the days of Madeline’s life. She was already their perfect daughter, regardless of her health and abilities.
As baby Madeline continued to grow and develop, she was surrounded by prayers of friends and their church family. One friend whose child had also been born with a severe malformation and only lived a few minutes after birth encouraged them to make memories before Madeline was even born. So they took the baby on “date nights,” capturing happy moments of Jessica, Riley, and baby Madeline in utero all together. Other women reached out to share their painful experiences of miscarriage, reassuring Jessica that she would not face Madeline’s future alone.
“We definitely had to trust God during that time, and we were thankful for each day that he gave us with her,” says Jessica. “My faith grew so much.”
Meeting Baby Madeline
On May 21, 2018, about three weeks before her due date, Madeline Rose Veal entered the world. Jessica and Riley fell in love again, this time with their daughter. After some time in the NICU and an MRI, they were allowed to bring her home.
Then, wonderfully surprising results came back from the brain scan—parts of Madeline’s brain that doctors had thought were missing were actually present, albeit smaller than average. She also tested negative for Turner’s Syndrome, another genetic disorder that would have put her at risk for further health complications. Jessica and Riley were elated! Although her under-developed brain made Madeline’s future uncertain, the news was a blessing. It was a small reminder that God was still in control, and He had a good plan for their daughter.
“Madeline had so many people praying for her,” says Jessica with deep gratitude. “I meet people now who say, ‘I think I prayed for your daughter before she was born.’” Riley and Jessica were introduced to another family at church whose four-year-old son had one of the same conditions as Madeline, although their condition is rare. The family offered encouragement and practical tips like therapy resources, and it helped Jessica and Riley continue to imagine a future for their little girl.
Madeline is now three years old. She’s a rambunctious blonde toddler with blue eyes and big, kissable cheeks. Her parents adore her, and she brings joy to whomever she meets. Her speech development is a little delayed, so she sees a speech therapist as part of an early intervention program a few times a month. There is a world of “unknowns” hanging in the future. Doctors cannot predict how much or little her brain condition will affect her continued development. There are still questions, and at times there is still fear. But for Jessica and Riley, there is also still trust in the God who has been faithful and will continue to be faithful.
Like all parents, Jessica and Riley want the very best for their daughter. But now they understand that the very best is simply for her to know she is loved by God. “I pray that God would give her strength, and that she would come to know God someday, and that we would be able to teach her about him,” says Jessica.
Thinking about what she would tell another mother in the same situation, Jessica has a few simple words of wisdom.
“It is really scary, and so unknown, but you can trust God,” she says. “This child is gonna be your child, and you’re going to love them no matter. God has a plan for you and for them.”