Expectant mothers spend months envisioning meeting their new child– how it will be the first time their baby opens their eyes, the first time they coo, the first time they respond to their touch.
For Erin Haase of Spirit Lake, Idaho, that moment didn’t come until 6 weeks after her daughter was born. It was a moment she wasn’t sure would come at all.
Twenty weeks into her pregnancy, Erin and her husband Ryan heard the news every parent dreads: there were potential abnormalities with their baby girl. Ultrasounds revealed that her ventricles were slightly enlarged, a potential marker for chromosomal issues. Erin was sent to Spokane for further testing and evaluation at 30 weeks. Based those ultrasounds, doctors warned the Haase’s that their daughter may have a chromosomal issue that would make her non-viable, almost guaranteeing that she would pass away in utero or immediately after birth. When further testing came back inconclusive, doctors were perplexed. They weren’t sure what was going on. And so the Haase’s waited.
Erin, a mother of two, knew when she started having contractions at 38 weeks that she was going into labor. She woke her husband, Ryan, and together they drove to Spokane. As they pulled into the city, it started to snow. “For me the snow was confirmation that we were going to have her that day.” At 4 am that morning Kayleigh Grace was born. Her name means “pure blessing”.
Immediately Erin and Ryan knew something was wrong. Kayleigh didn’t cry out. “She gave out a little squeak but she was really lethargic,” recalls Erin. Nurses whisked Erin’s brand new baby away to the NICU, not entirely sure what was happening. “She was really small, and her head was really small,” says Erin. Later that day, the Haase’s sat down with their neurosurgeon, neonatologist, and neurologist, who explained that at some point during the second trimester, Kayleigh’s brain had stopped growing.
Erin was shocked and heartbroken. As she admits, “I didn’t digest that for a few days.” Overwhelmed by a battery of tests and exams, she worried constantly about what Kayleigh’s life was going to look like. A few days after her birth, a geneticist noticed that Kayleight’s lactic acid levels were on the rise. This observation eventually led to a shocking diagnosis: Kayleigh had an extremely rare condition called Pyruvate Dehydrogenase Complex Deficiency (PDCD). Only a few hundred cases of PDCD have ever been reported.
Because PDCD is so rare, doctors admitted that there was no road map to follow for Kayleigh’s treatment. Initially they tried putting her on a special protein-based diet. While there was some improvement, her biometrics were still very concerning, and she remained lethargic and largely unresponsive. Then one day the geneticist came and told the Haase’s he thought that they should scrap the whole diet and start from scratch. As he put it “We’re going to do a Hail Mary”. Using a complicated formula designed with the help of a nutritionist, Kayleigh would receive extremely customized nutrition. There were risks, but the Haase’s decided to give it a try. Again they waited.
The next day, there was no real change. So when Erin when to visit her daughter on Monday, she was prepared to be disappointed. Instead, she was amazed.
“I walked over and noticed right away…her eyes are the biggest I’ve ever seen...I picked her up and she was interacting with us and she was cooing...she was reaching out for us and pulling on her daddy’s finger…she was looking around and looking for people. It was like a new baby.”
Her nurses, physical therapists and other caregivers all came into the room, everyone was in tears. They couldn’t believe the transformation.
Kayleigh’s biometric numbers confirmed what her behavior suggested – the new diet was working. “All of the sudden we’re thinking…maybe she will walk…maybe she will talk…maybe she can do things that we thought would be impossible…” Erin tearfully recalls, “She wouldn’t go to sleep. She wouldn’t close her eyes. She wanted to stare at me the whole time”. After six weeks, it felt like she was finally meeting her daughter.
The road ahead is still very uncertain. The Haase’s are planning to take Kayleigh to Seattle for additional consultation, and she will need 24 hour care for the foreseeable future. Erin is worried about how she’ll manage, especially with two other children to care for. But as she’s talking, the snow starts to fall – and for her, this is a sign. The snow was falling on the day Kayleigh was born and on the day that she “woke up”. “It’s like my sign. This beautiful snow is a sign to me that my daughter is going to be ok. She’s beating the odds.”
And whatever happens, Erin is certain that her daughter’s life is going to have an impact. “She’s going to make a difference,” Erin says defiantly. “They need more research. They need more funding. I’m going to be an advocate on behalf of my daughter.”
The Haase’s are heading home, but will always be grateful for their time at the Ronald McDonald House. They were actually familiar with the organization when they arrived in Spokane – they had stayed at the Ronald McDonald House is Los Angeles when their first son was born and spent 4 months in the NICU. When they moved to Spirit Lake they travelled to the Spokane Ronald McDonald House and came to cook for families, never imagining just eight months later they would be staying here. “The amount of generosity in this place is overwhelming,” she says. “We are forever grateful.”
For more information on Kayleigh Grace, including ways that you can show support, visit her Facebook page: Faith, Hope and Love for Kayleigh Grace.