Surviving birth, struggling to live

Story highlights

  • Jennifer Allison's daughter, Sky, was given a 15-20% chance of surviving her first year
  • Photographer Ash Adams has documented the family's struggle through 19 months

(CNN)Jennifer Allison didn't know how long her baby might survive after being born.

When she was 20 weeks pregnant, the doctor told her that her daughter, Sky, would be born with heterotaxy, a series of defects affecting the heart, intestines, spleen and other organs. They gave the baby a 15-20% chance of surviving her first year and warned Allison that even if her daughter made it through that, she may not survive the toddler years.
Allison, a nurse and mother of two other young children, decided to "carry Sky as far as she wanted to go." She reached out to documentary photographer Ash Adams, aware of her documentary body of work on birth in Alaska. Allison didn't know how much time she'd have with Sky and thought she'd like to have something documented of what time she did have with her. She told Adams that she wanted Sky's birth story to be shared and be a part of something bigger.
    Adams was at the hospital when Allison delivered Sky, and she said she will never forget the emotional memory of the medical team cutting the cord and whisking Sky down the hall to be evaluated by the cardiology team. Allison, distraught, screamed as they took her baby away. Adams followed the team down the hall, wondering if Sky had survived the birth.
    Photographer Ash Adams
    "The team put (Sky) on the examination table on her side, and she opened one eye from a very pink face and looked right at me from just about a foot away," Adams said. "And I knew that she was going to live beyond that day."
    Adams and Allison developed a bond, and Adams asked if she could keep documenting their story. Adams herself is a mother of two small children, and she said she feels very connected to the Allison family, especially since she was there the day that Sky was born 19 months ago.
    Since then, Sky has endured three open-heart surgeries and two invasive surgeries on her intestines. Another open-heart surgery is most likely in her future. Parts of her heart will need to be replaced.
    "Sky has struggled to just be a baby and toddler, struggled to develop like any other baby in spite of her often lower-than-normal oxygen saturations, inpatient hospitalizations and physical recovery times," Adams said. "She is walking now and cognitively developing like any other 19-month-old in spite of all of those things."
    Over time, Adams has watched the family dynamic shift to make sure the children are always nurtured.
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    When Sky has to be in the hospital, her mother is right next to her as her source of comfort and a vigilant advocate for her well-being and quality of life. She researches the options for Sky's future every day. She lives and sleeps in the hospital room and campaigns to be able to share a bed with Sky and hold her child.
    The family lives in Alaska and has to travel far from home to find the care that Sky needs, so Allison's husband, Aaron, becomes the primary parent for Story and Sage when Sky and her mother are at the hospital. Adams said Aaron, a paramedic, works hard to keep them entertained, and both parents also make sure to explain to Story and Sage what Sky is going through. The children are gentle with Sky and her "broken heart," and they have bonded with her.
    "Jen and Aaron are doing all they can to deal with the stress of providing financially and emotionally for their family," Adams said. "Quality of life, not just longevity, is important to them, and so there is also joy intermixed with this stress.
    "But they are fighting for those moments. All along there's been a fight just to get to the next month, the next milestone. It's a very tenuous kind of hope. A hope that Sky lives, but also that she lives well."
    Adams has captured their story through black-and-white images to work around the distracting colors and harsh lighting of a hospital backdrop. It also helps her to focus on the emotional narrative of the story.
    Although Adams was a photographer in high school and college, it wasn't until she had children that she saw storytelling in a new way and began working on more photo stories. The idea of motherhood as a life-changing experience has caused Sky's story to resonate with her.
    Documenting Sky's battle to live also opened Adams' eyes to the struggle of parents who have hospitalized children.
    "I think I had an idea that parents had more support than they do in these situations," Adams said. "I hope that people see how much love and difficulty goes into having a child who is inpatient intermittently from a young age, and are impressed by the resilience and strength of this family. That maybe they think about how our systems do and do not provide support for families like this, for babies like Sky and mothers like Jen. I hope that they see that this is a family that is trying."
    Adams has hope for Sky as well and plans to keep documenting the family's journey.
    "I want Sky to live," she said. "I want to photograph her going to kindergarten, graduating high school. I want that for Sky, for all of them."