By Kim Berry
Mom to Abigail
22 q Duplication Syndrome with Epilepsy
Born October 2007
My pregnancy with Abbie was high risk from the beginning. I had ultrasounds every week because she had stopped growing, and the doctors needed to monitor her closely. At 20 weeks, I was hospitalized because I was leaking amniotic fluid. I spent a month in the hospital, but thankfully, they were able to keep her safe. I eventually delivered her at 39 weeks by C-section.
When Abbie was born, the umbilical cord was wrapped around her three times, and she wasn’t responding well. She was taken to the NICU, and that was just the beginning of a lifetime of medical challenges.
My hopes and dreams for Abbie were simple. I wanted her to have a normal life, without having to deal with so many medical complications. But she was sick throughout her childhood, and when she was four years old, she became extremely ill with cryptosporidium. She was admitted to the hospital, where her doctors consulted specialists in St. Louis to determine how to treat her and what medications she needed.
After that hospitalization, we started seeing a different doctor who ordered blood testing. Four months later, we were referred to Children’s Mercy in Kansas City to see a specialist. That’s when we learned Abbie had a genetic disorder called 22q duplication syndrome.
Getting that diagnosis changed our lives dramatically. Abbie has several medical conditions that we have to manage, and it seems like we’re always going to doctors or dealing with another health issue. One of my biggest fears has always been that she’ll never get to experience a normal life without being sick. All those medical appointments and hospital visits are scary for her, too.
Over the years, Abbie has undergone multiple surgeries and spent a lot of time in the hospital. She’s missed so much school because of her health, and she’s only able to attend half days because of her condition. I even lost my job because my employers weren’t understanding about the time I needed to care for her. It’s been financially and emotionally difficult, especially watching everything she’s had to endure.
One of our most frightening experiences happened in March 2024, when Abbie underwent surgery in Kansas City to have tubes placed for feeding and medication. One tube was placed in her side, and another was placed through her belly button to her colon so she could receive medication to help her have bowel movements.
I was originally told we would be in the hospital for four days. Instead, we were there for 19.
Abbie developed a blood clot associated with her PICC line and experienced complications that required additional surgeries. Her bowel had to be cut, and she needed a drain tube. There were multiple problems with the tubes, and at several points, I was told she was septic. The doctors weren’t sure what was going to happen.
It was an incredibly scary time, especially because I was in Kansas City by myself. We’ve had several more hospital admissions because of complications with her tubes, along with other medical issues. It’s been a hard journey.
Abbie still has both tubes, and we don’t know how long she’ll need them. We continue to have problems with them, which has meant more hospital visits. She still attends school for only half the day, and all of these challenges have made things difficult for her.
But through everything, Abbie is the sweetest, most caring child I’ve ever met. No matter what she’s going through, she always manages to keep a positive attitude. She loves arts and crafts and spending time with her dog.
As I think about her future, my biggest hope is that when she graduates next year, she’ll find something that makes her happy while giving her some independence. I know her genetic condition will never go away, but I hope her health will improve and she’ll be able to enjoy more of the things she wants to do.
We first connected with On Angels’ Wings about six years ago after a friend told me about the organization. We had our first photography session at a park, just Abbie and me, and the pictures were absolutely beautiful. It was such a relief to see her enjoy having her pictures taken without having to worry about what other people thought.
Since then, we’ve received so much support from OAW. They’ve given Abbie opportunities to just feel like a normal kid. The Santa pictures are especially meaningful because she feels so special during those sessions. The carnival is another wonderful experience because she gets to be herself and simply enjoy the day.
On Angels’ Wings is important because of the emotional support they provide to families. They do everything they can to make families feel welcome and supported when they’re facing a crisis or dealing with their child’s medical challenges. They also try to help families find resources when they need them, making life a little easier and giving parents one less thing to worry about.
When you’re navigating a journey like ours, having people who understand and genuinely care makes such a difference.
