When doctors told Hayley and Trevor Lamoureux halfway through their pregnancy their baby had a life-threatening kidney disease, they asked: “What if?”
What if their daughter beat the odds? What if she were born healthy enough to survive? What if they could hold her, just for a few minutes?
“I don’t know what her life will be like. You might get an hour, you might get 10,” Hayley recalled the doctor telling them. “But I can’t say that one hour won’t be the greatest hour of your life.”
“We went in there knowing whatever time we got, it would be a blessing,” she added.
They were blessed with 30 hours. Thirty hours after their daughter Veyda Faith entered the world, she died in their arms. And those 30 hours have changed their lives.
“Our hearts are 10 times bigger than they were before,” Hayley told the Denver Catholic Jan. 9 at the couple’s lower downtown apartment.
Trusting God’s plan
The winding road of Veyda’s journey began last August when Hayley, 27, went for a routine 20-week ultrasound. There the doctor mentioned the baby’s kidneys looked “bright.” Further testing revealed Veyda had autosomal recessive polycystic kidney disease, a rare genetic disorder occurring as infrequently as once in every 40,000 people, according to the ARPKD/CHF Alliance. Neonatal death occurs in up to 50 percent of cases due to undeveloped lungs, generally caused by insufficient amniotic fluid.
“(The doctor) said it’s fatal and we recommend termination because this diagnosis isn’t compatible with life,” explained Hayley.
It was a recommendation she and Trevor wouldn’t consider as they intended to continue the pregnancy regardless of the diagnosis.
“She already had so much personality,” she said. “There’s just no way, regardless of what the doctor said that we could do that because we already felt so connected to her.”
They refused further testing, though continued with ultrasounds and monitoring of the baby’s movement and heart rate, as well as amniotic fluid. To prepare for the care Veyda might need, including dialysis and a transplant, they learned everything they could about kidney disease.
“We became consumed with doing everything we could, knowing that it might not be OK.”
They also trusted in God and in his plan.
“There were so many times when I would be getting in this snowball of worrying and then I would just remember that it was out of my hands, that I just had to trust,” Hayley said. “I just had to continue to be her vessel, and do everything I could to bring her into this world.”
A touch, a kiss
At 31 weeks there was no amniotic fluid left. At 33 weeks doctors determined the safest method for Veyda’s delivery would be a Caesarean section at 37 weeks.
Veyda was born at 2:35 p.m. Dec. 10. She weighed in at a respectable 6 pounds and 8 ounces, but her lungs weren’t developed. It was like “trying to inflate a tennis ball,” doctors told them. She was swept off to the neonatal intensive care unit where she was connected to a ventilator to breathe for her.
Hayley and Trevor weren’t able to hold their newborn daughter her first day, but they were overjoyed, they said, to simply touch her feet and hands, and “just be there with her.” They kissed her forehead, she opened her eyes; they rubbed her feet, she flexed her toes; they applied lip balm to her chapped lips, she opened her eyes again.
“I was beyond ecstatic,” Hayley said through her tears, as her husband cried by her side. “When she opened her eyes I was so happy.”
By the next morning, there was no progress in Veyda’s lung development. Doctors reported there was nothing they could do.
“Of course that was really hard to hear,” Hayley shared, but in the midst of her pain came one of her greatest joys: she was able to hold Veyda for the first time.
“The minute that they set her in my hands, her oxygen levels went from 60 percent to 90 percent,” Hayley said. “Of course I thought, ‘That’s what she needed, she needed her mom and she’s OK now’ … it was worth all of it because it was so amazing.”
But Veyda wasn’t breathing on her own. And now while holding her, they could now feel how the ventilator was convulsing her body.
“(We thought) we can’t continue to selfishly have her on this ventilation because, you know, it was just shaking her little body.”
Veyda was baptized in her first few hours, and after they decided to remove the ventilator, the new parents were asked when they would prefer to say their goodbyes.
“We didn’t want to let go of her and we didn’t want to have her not be with us,” Hayley said. “We both agreed it was best to take out the tubes then because we didn’t want to continue to have her suffer.”
Love surpassing expectations
The doctor left mother, father and baby alone; allowing them time together as a family.
“Even after she passed away in our arms I was happy just to look at her,” Hayley said. “She gave us a love we never knew possible. But also a loss I never knew I could feel.”
Father Scott Bailey, who the couple knew from attending Mass at the Cathedral Basilica of the Immaculate Conception, comforted the family at Veyda’s funeral service Dec. 20.
“His message was amazing,” Hayley said. “What he said is she’s taking care of us now. When we have a moment of weakness, we know she’s watching over us. Now we have a little angel up there who looks down on us and gives us gifts all the time.”
This has brought them peace.
“I’m still happier now than I was before meeting her,” Hayley said. “We don’t have any regrets at all about the time spent with her because it was a love that we’ve never known.”