“I hope that Abbey’s story can give hope to others…”
Abbey Campbell, Partial Trisomy 13, 9/24/2007, Grayson, KY
Hi! I’m Annie and get ready because I’m long-winded. My daughter, Abbey , was born Sept. 24, 2007. Yep, she’s now 6 years old and doing awesome. After she was born, the pediatrician noticed a few things that he just wanted checked out, all of which turned out to be superficial physical aspects.
She was kept in NICU for a week because she had an episode shortly after birth where she stopped breathing, and she also had trouble sucking on her bottle. At 3 weeks old we took her for another follow up with the pediatrician because every day since we’d brought her home we noticed that she’d have these apnea episodes. This started Abbey’s first of many hospital stays.
When nothing infectious showed in her test results, the doctors sent a genetic test off. A month later, we got the results. Abbey had partial trisomy 13. We knew absolutely nothing about it and were basically in shock and didn’t comprehend hardly anything the doctor was telling us. He must have realized it and gave us the test results and insisted we get Abbey in to see a geneticist.
Because of the frequent apnea episodes, Abbey had already had a sleep study and bronchoscopy by this time and the ENT had removed extra tissue from around her epiglottis, hoping it would help. We went for another sleep study at the beginning of December, mentioned the test results to one of the other docs we were seeing the next day at Cincinnati Children’s in OH, and before we had a chance to finish the appointments, the ENT found us and admitted Abbey to the hospital on the spot.
Her apnea episodes had more than doubled per hour and they wanted to try oxygen and monitor her. At the same time, they had a geneticist come visit us. And that’s when, on a cold Dec day, my heart started breaking. They were surprised Abbey was still alive, considering the statistics they knew. All of the sudden my brain was overloaded with technical diagnosis, signs, symptoms of trisomy, every test they could think of was run on her to see how she was affected at this point and to give us a prognosis on what her life was going to be like.
Only problem was that these doctors had only run across less than 10 trisomy 13 “cases” and only 1 was partial and remotely similar to Abbey’s specific diagnosis. So they just didn’t know what life was going to be. Since they were stunned she’d lived this long, they figured she probably wouldn’t crawl, much less walk. Communication difficulties, severe developmental delays, and she might not make it to one year. It was unlikely.
After the doctors left the room, I broke. Then my husband did the one thing I needed and couldn’t do myself. He knelt with me and we prayed. We prayed for Abbey, for guidance, for comprehension, for understanding and most especially for the strength to be the parents she needed.
Now it’s almost 7 years later. Abbey has had many other surgeries, including having a g-tube placed for nutrition purposes, and a trach placed because the obstructive sleep apnea was just too bad, even though she made it to 14 months before we had to have it done. She sat up by herself for the first time at 18 months, started crawling at around 2 1/2 years, pulled herself up to stand when she was 3 and shocked the heck out of me when she was walking holding her daddy’s hands one day, let go and walked her first, unaided steps to me.
She had been 4 years old for a month. She’s spunky, independent, funny, sweet, rotten, loving and has the best laugh I’ve ever heard. She loves her big sister, Ella (pictured with her), more than anything and will mimic and try new things for Ella when her daddy and I have exhausted all our ideas. She has a temper, but it mostly comes from her frustration in not being able to communicate with us, so she’s learning to use a choice board and some iPad apps to help.
She’s just finished her kindergarten year and gets homebound school as well. All in all, Abbey has doctors appointments every few months to keep a check on everything and she’s starting to take more tastes of food by mouth. It’s also possible that her trach will be taken out sometime in the next year or so, she’s doing so well. She still has medical issues pop up, and we get her checked out anytime something surprises us too, but her health has improved 100% since those initial first 24 months. Abbey has so much potential for her life and she has a very special purpose that God has planned out, we just have to let Him help us guide her. So that’s Abbey in a very large nutshell that I even tried to condense down into a smaller story. Sorry if didn’t really work. Lol! I hope that Abbeys story can give hope to others and know that I pray daily for each of our wonderful trisomy kiddos, those here with us and those who are angels. God Bless!