Through Gwen’s second pregnancy, all tests came back normal and she went full term with her baby. After she was born, however, her daughter was diagnosed with Asparagine synthetase deficiency(ASNS) – which includes Microcephaly and Epilepsy– as well as Dwarfism, Cortical Visual Impairment, and Cerebral Palsy.
When she was pregnant with her third child, doctors discovered her unborn baby would be born with the same diagnoses.They never thought that another daughter would be born with the same disability. This time they found out about Lola’s condition during Gwen’s pregnancy.
Discovering Your Child Has ASNS and Microcephaly
Gwen and her husband were not expecting their second child, Claire, to be diagnosed with Asparagine Synthetase Deficiency because everything looked normal during the first almost twenty weeks of pregnancy, but at that point they found out Claire’s head was not growing as fast as it should.
Her doctor wanted her to explore all possible options, and Gwen did her research on an abortion. But when she called the office of a doctor she knew who performed abortions a wave of sickness came over her.
“I could be missing out on a child that ends up doing more than Claire’s able to do or that brings even more joy to our family. Who am I to play God? I was given this child for a reason. Why am I trying to change this path?” Gwen said.
“When I’m in the situation personally to make that decision, it felt like the worst decision I could possibly make. It’s weird. When it’s your body and it’s your baby that you’ve loved for 26 weeks, and that you feel move every single day all day every day, and you have all of your hopes and dreams pinned on, it actually wasn’t that hard of a decision to make…Both Scott and I felt like it was 100 percent clear on what we should do…I was supposed to be these girls’ mom.”
When she made this decision, Gwen turned from her unending tears to feeling hope for the first time. Raising two profoundly affected children has been one of the greatest blessings of her life.
Day-to-Day Caring for Children with ASNS
With ASNS comes a series of symptoms, including having Microcephaly (smaller sized head), frequent seizures, and an inability to walk, talk or feed oneself.
Both Lola and Claire have trouble sleeping through the night, and needed to be watched over at all times by a parent or a babysitter. Gwen knows her family’s life is far from typical. Everyday brings something new, something different from the last day. They’ve learned to accept that.
Instead of being scared of the girls’ seizures, Gwen sees them in a different light. “It was almost like we could equate [the seizures] to their brains trying to work and trying to connect. The messages or neurons were firing, and it was like we saw more awareness and better eye contact. We saw the girls being more interactive after the seizures, so for us, it wasn’t such a negative thing.”
There has also been improvement in other areas. For so long the girls were not able to do simple things like sit up by themselves or even smile, but even the smallest improvements are amazing to Gwen and her husband. Seeing their children learn and grow is beautiful, no matter how long it takes.
Along with the day-to-day difficulties comes a feeling that everything is worth it to Gwen. She has “no regrets,” and feels “a lot more joys that I thought were possible. I think the joys have come in little packages, like things that didn’t expect.”
Tips for Parents of Children with ASNS
There were many things Gwen wished she would have known when she found out she had daughters with Asparagine Synthetase Deficiency.
For example, there are some people with Microcephaly who live well into their adult years. The more research she did, the more people she found who were experiencing the same thing. She has also learned to “trust [her] gut” when she doesn’t know what to do. There are often many good opinions from doctors and other people, but the parents ultimately know the child the best.
Gwen loves it when people who don’t even know Claire and Lola, just come up to them and talk to them and get to know them. The girls are well known in their city.
“My whole takeaway for sharing the girls’ lives is for other people to not be afraid to reach out to special needs kids in their communities. Those families need that. It feels good when people embrace our kids who are different….We don’t pay attention to any of the negative. We focus on the love, because there’s so much of that.”
To parents who are expecting or have children with ASNS, Gwen says, “This life is special and perfect and wonderful exactly the way that it is. It’s making you a better person. It’s making you stronger. It’s uniting your family. It’s helping your kid to know how much they’re loved and how important they are to you.”
Gwen and Scott know the struggles and joys of ASNS. They know ASNS and it’s many symptoms, the most prevalent of which is Microcephaly for their two girls. “I just really want people to know that they can do it.”