Girl with rare disorders has ‘series of unfortunate events,’ says mom
Jessica Sims / Photo
Haven Sims, who maintains a smiling disposition despite her long list of medical problems, has just undergone at least the 10th surgery in her life. Her mom, Jessica, is trying to stay afloat in the midst of the chaos.
Earlier this year, the community was introduced to Haven Sims, a little girl who has been through more in her seven years than most adults have in a lifetime.
When she was just an infant, Haven was diagnosed with a disorder called VACTERL Association. This condition affects her spine, heart, veins and arteries, limbs, kidneys and brain. Her arteries don’t let enough oxygen in her body or let her blood flow normally so she tires easily. She gets kidney infections. She has malformed feet and vision and hearing problems.
Haven also has polysplenia, which means she has more than one spleen (doctors think six). She goes to between 20 and 30 doctor’s appointments every month and has been through numerous surgeries - the most recent of which was a risky colon surgery she is still in recovery from.
To make matters more difficult, Haven is being raised by a single mother, Jessica, who is doing the best she can to get her daughter to all her appointments and surgeries (often specialists who are out of town), hold down a full-time job that requires her to travel throughout Georgia and Tennessee, and get Haven to school. Haven and Jessica get up between 2 a.m. and 3 a.m. every day to have time to do enemas, flush her bladder, and perform other medical tasks like feet wrapping. They do the same thing in the evening, which adds up to several hours a day. Her father, who lives in Maine, is over $40,000 behind in child support.
“He told the judge he shouldn’t have to pay for a defective child,” Jessica said.
The Pickens Community Service Club took up the Sims’ family as a cause last year, calling for “Haven’s Helpers” to step up and support this family through their difficult time. This most recent surgery has made an already challenging life even more so and the family still needs help.
Sims said 20 percent of her daughter’s colon is two times larger than most adult males and wasn’t functioning properly. She also has a neurogenic bladder, which means it spasms and pushes urine into her kidney. This has caused chronic kidney disease. (Jessica has lost 62 pounds in hopes that she can become a kidney donor for her daughter.)
In January, doctors at Children’s Nationwide Hospital in Ohio took out 20 percent of Haven’s colon and used that tissue to enlarge her bladder by 50 percent. They also used her appendix to make a pathway to her bladder through her belly button so it can be drained. The surgery is dangerous because there is high risk of infection and dehydration, and her bladder could explode. Right now, Haven has three tubes coming out of her abdomen.
“She told me she thinks she looks like an alien,” Jessica said. “We got a kick out of that, but she’s allergic to the stitches and her incisions are all infected no matter how much I clean them.”
Jessica’s spare bedroom is now filled with Haven’s medical supplies.
“I’ve got a room filled with catheters,”said Jessica, who has hardly slept in two weeks because she’s had to get up every hour to drain her daughter’s bladder. It could explode if she doesn’t. “I laughed and told Haven we should make cath angels, but this is going to make her life easier in the long run. She’ll have more freedoms. I spent months talking her up for this surgery telling her things would be better. When we got there she said ‘Give me my IV. I’m ready to go!’ It’s hard as a mom with a special needs child, because you have to make decisions that will affect their whole life.”
“I can’t thank them enough,” mom says of service club
Haven is staying with her aunt this week, and Jessica hopes another family member can keep her the next week so she can take off work when two of the three tubes will be removed.
“I can’t miss any more work,” she said. “All of this has definitely been a financial and emotional strain. Being a special needs parents is a ball of stress, with huge amounts of joy - but the only reason we’ve been able to survive is because of the [Pickens Community] Service Club. I would have never made it to Ohio. I can’t thank them enough.”
Despite all her physical issues, Haven is in regular classes at Hill City Elementary where she is on an Individualized Education Program and is assisted by a staff nurse with her medical needs.
“She’s so smart,” Jessica said. “I was told she’d never be able to do any of these things, but she walks and talks 90 m.p.h. She’s little for her age because she burns calories five times faster than she should, but she acts like she’s 10 feet tall and bullet proof.”
If you would like to become one of Haven’s Helpers you can make a donation by mailing it to the Pickens Community Service Club at 23 Mary Street, Jasper, Ga. 30143. Make checks payable to Pickens Community Service Club with “Haven’s Helpers” on the remittance line. The club can be reached at 706- 692-6598.