A Mother’s Story Lily’s Legacy: 103 Days of Giving

Parents will tell you that having a child changes your life forever. While no one parent’s experience is exactly like another, most parents can attest to a depth of feeling from love to anguish that they have never experienced before having children. Such is the case with Michael and Chrissy Whitten, whose daughter Lilian Grace Whitten was born on April 25, 2010. She lived 103 days, but in her brief life Lily changed her mother’s life forever.

Losing Lilian to Trisomy 18 (also called Edwards syndrome) on August 5, 2010, for her parents, was the end of one story, but the beginning of another. To honor Lily’s life, Michael and Chrissy created the Warrior Princess Foundation, a non-profit that helps families with the high costs of having a Trisomy 18 or Trisomy 13 child. Along the way, Chrissy also became one of the subjects in a documentary about mothers who donate their breast milk after they have lost babies.

Lilian’s Story

After two miscarriages, Chrissy was ecstatic to learn that she was pregnant with Lilian. But at around 20 weeks, things began to go wrong with the pregnancy. “We found out she had heart problems,” Chrissy said, “but the doctor couldn’t pinpoint the problem. Over time, things got worse; it was one bad thing after another. Respiratory problems, my placenta separating. Our doctor said that most likely her first breath would also be her last. You get to the point where you have nothing left to hold on to except God.”

But Lily’s first breath was not her last. While doctors and staff at the neonatal intensive care unit (NICU) at the Children’s Hospital at Saint Francis worked to get Lilian strong enough to endure heart surgery, Chrissy prayed, measuring each day in the number of ounces Lily gained and the number of times alarms went off on the machines monitoring her tiny body.

For the first few days, Chrissy and Michael weren’t sure what was wrong with Lily. They knew she was premature and that she had heart issues, but on day 16 the geneticist came to them with bad news. Lilian had Trisomy 18 (T18), a chromosome abnormality that is usually fatal, with most babies dying before birth, and those who do make it typically only living a few days. Less than 10 percent of T18 babies live to one year of age.

“I was devastated,” Chrissy said. “It was very emotional, very hard. We thought we might not make it, but God gave me a verse that I found in the [St. Francis] gift shop: Ephesians 3:17-19. God prepared me for this mission, and we were going to live it to the fullest.”
Not knowing from one day to the next what would happen with Lily, the single thing that Chrissy could control was providing her daughter with life-giving breast milk. “She was in the NICU for 51 days,” Chrissy said. “I pumped and pumped. It kept me from going crazy.”
Lilian did gain weight. She got big enough to have surgery and even go home for a time, but an infection sent her back to the hospital. Back at Saint Francis, Michael and Chrissy made a conscious choice to walk with their daughter, to do things for her, not to her. “Dr. Gomez [Michael Gomez, medical director of the NICU] said ‘whatever you guys want to do, I will do it’. He was incredible,” Chrissy said. “Everyone in our presence at Saint Francis was amazing. We only put her on life support for 24 hours. She coded three times. We did everything according to what she could do.”

After 103 days, Lilian gave up her fight.

 

That was the beginning of Chrissy’s new life. Throughout Lily’s journey, and for 25 days afterward until her milk production stopped, Chrissy had pumped and stored her breast milk in a small freezer at home. Heartbroken, she didn’t want to just throw away the life-giving food, which a friend had dubbed Liquid Gold Warrior Food (LGWF).

Chrissy donated some of the breast milk to a friend with twins, but she wanted the rest to go to a child with T18. Through her friend Michelle Anderson, a mom Chrissy had met by connecting online to other moms with T18/T13 children, Chrissy was introduced to Denise Williams in Houston, TX. Denise’s 2-year-old daughter Trishtan was T18 and couldn’t tolerate formula.

“It was a huge leap of faith for her to take my milk,” Chrissy said. There are banks that purify and store donated breast milk, but the cost for parents can be $7 an ounce and often insurance won’t pay for it, especially once a child goes home from the hospital. Denise made the decision to accept, mom-to-mom, Chrissy’s freely given offer.

“My father-in-law, Monty Whitten, and I loaded up and took the entire freezer full of breast milk to Houston,” Chrissy said. “I got to hold Trishtan and meet other T18 families.”

Michelle, whose son had died the year before from T18, arranged for the local news affiliates and a film team that was doing a documentary on women who donate their breast milk to be at the delivery of Chrissy’s freezer.

“It was amazing to finally get to hug the neck of the women who helped me through the last few months,” Chrissy said.

Chrissy also connected with Kevin West and Jarred King, co-producers of the documentary “Donor Milk.” Kevin West’s wife had donated her own milk after their child was stillborn at 8 months. The film underscores the health-giving properties of breast milk through the eyes of gracious and giving mothers like Chrissy who, despite their grief, choose to give to others.

And Lily’s story continues. The Warrior Princess Foundation held its second run on April 25, 2012 to honor Lilian’s birthday. Chrissy said that looking forward to the run to help other families like hers takes away some of the sting of another approaching birthday.
“The thing is, it never goes away,” Chrissy said, “but every time I do something, it makes my heart happy. If it weren’t for Lily, I wouldn’t be doing any of this. Any parent who loses a child wants to know that their child’s life mattered.”

Find more information on the Warrior Princess Foundation's website.

Categories: Health, Infant/Pre-School, Little Ones

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