Hemophilia Program Provides Dedication, Support and Answers
After years of struggling with her genetic blood disorder, Olivia Traficanti and her family believe they are now in a much better place. Gaining more confidence each day, Olivia, 11, remains positive as she learns to become more self-sufficient in her treatment and care.
Nosebleeds happen. Children get them; parents expect them.
But for Olivia Traficanti, her first nose bleed at 1 year old was anything but normal.
Her parents, Leonard and Christine, had a difficult time getting the bleeding to stop, so they took their adopted daughter to a local pediatrician where tests revealed Olivia’s diagnosis of type 3 von Willebrand disease (VWD).
The genetic blood disorder is caused by missing or defective clotting protein (von Willebrand factor), resulting in frequent nosebleeds and easy bruising. There is no cure, but with treatment and self-care patients like Oliva, who has the most severe form of VWD, can lead normal, active lives.
To ensure she would receive the best treatment and care, Olivia’s parents brought her to Cincinnati Children’s Hemophilia and Bleeding Disorders Program – where she’s remained a patient ever since.
“[Cincinnati] Children’s really has been exceptional care,” said Christine. “The dedication, the protectiveness, the support and really seeking to find answers or solutions at every turn – that really impresses us.”
The whole team has been wonderful, added Leonard.
“They’ve been there for us. They made this manageable for us. They’ve accommodated us,” he said. “We’ve always been a part of the process. The collaboration has been awesome.”
Christine says it’s also the little things that really add up to create the “exceptional care” they’ve received. For instance, staff will allow Olivia to begin treatment at our Burnet Campus but finish up the same day’s treatment at our northern Liberty Campus, which is closer to the Traficantis’ home.
“They let me leave before rush hour so we can finish up at Liberty. That means a lot to me – to be able to get home without fighting traffic,” she said.
‘Thankfully, we’ve got her disorder well-managed’
Even while on vacation, the Traficantis can rely on Cincinnati Children’s staff to be there for them, if needed.
Recently, Olivia had an issue arise while the family was on vacation in North Carolina. One of Olivia’s hematologists at Cincinnati Children’s called the hospital to make sure they had all the information needed to treat Olivia properly.
“It wasn’t a big hospital and the physician came into our room and said, ‘Your team at Cincinnati Children’s is very protective and very amazing. They’ve outlined everything for us,’ ” said Christine. “The hematologist even gave his cell phone number in case the doctor in North Carolina wanted to call for any reason.”
According to her parents, Olivia is now in a much better place. Although she has an active inhibitor – antibodies that are produced by the immune system which stop the body from accepting the factor treatment and thus prevent blood from clotting –
Olivia is learning to better handle the day to day realities of her condition.
“Thankfully, we’ve got her disorder well-managed,” said Leonard. “The last year we’ve been back to our normal.”
Which for Olivia means fewer bleeding incidents, school absences and Emergency Department visits. “I’ve not had that many nosebleeds,” she says proudly.
Becoming More Self-Sufficient
And as she gets older, Olivia is taking a more active role in her care. Part of living with the life-long condition involves getting over any fear of needles.
Olivia has made great progress by attending Cincinnati Children’s week-long summer camp (Camp NjoyItAll) hosted by the Cancer and Blood Diseases Institute.
She’s attended camp for several years and in working with Ann Otte, a registered nurse and bleeding disorder patient navigator, Olivia has learned to mix her own medication and practice self-infusion. The goal is for her to no longer be dependent on someone else for her treatment (factor).
In addition to the benefits of using numbing cream to dull the pain, Otte said it’s oftentimes the success of other campers which helps ease tension and build excitement in patients who are learning to self-infuse.
“We do one kid at a time and sometimes the whole table is cheering that one kid on. They are all super excited. And mad if they don’t get the vein right away,” said Otte. “They want to be successful. They are all so tough, it’s crazy.”
“I know [Olivia] very well. We’ve spent a lot of time together. Her veins can be challenging to access. But as she’s watched the other kids do it that’s given her more confidence. This was the first year she was willing to stick herself. It’s a big deal.”
Kimberly Davis, nurse care manager for the Hemophilia and Bleeding Disorders Program, says the camp helps patients find strength within themselves.
“It gives them confidence that I don't think they know they have until they are around kids their age. It can compel them to do things they never thought they could do,” said Davis.
(Published December 2019)