Ronald McDonald House
Kaylee James’ Remarkable Story
By Gene Davis
Modern medicine has made a significant difference in the outcomes of premature deliveries. In recent years, it has become possible for babies born earlier and earlier to survive. While most serious conditions associated with preemies can be detected immediately and attempts made to address them, there are often lingering issues which parents must face well after their baby is released from the hospital.
It was in February, 2008 that Angie James gave birth prematurely to twin girls Mia and Kaylee. Born 13–weeks early, with complications, and on the remote island of Kwajalein, the twins were in extreme jeopardy. Sadly, Mia’s heart and lungs were not strong enough for her to survive, but little Kaylee, born weighing 2 lbs. 4 oz., did make it through her first few hours. Although doctors had their doubts that Kaylee would live, Angie and her husband Dennis were determined to do all they could for her, and the infant was rushed to Honolulu for intensive care.
To be close to Kaylee, and see her through this ordeal, mom, dad and Kayee’s four–year–old sister Kierah stayed at the Ronald McDonald House for four months while Kaylee fought for her life. With her family by her side, never giving up hope, the newborn grew stronger, and her breathing, hearing and sight began to develop. Finally, in June, doctors determined that she was stable enough and strong enough to be released from the hospital and go home. They called her their “miracle baby.”
“Cognitively, Kaylee is on track right now. Physically, she is a little delayed, but she is still making steady progress,” Angie says. Delightful little Kaylee, now 21–months old, draws people to her like a magnet with her ready smile and happy disposition. But she still faces ongoing challenges that one can barely imagine. This means return trips to Honolulu for additional care – and repeat stays at the Ronald McDonald House.
Angie says their trips to Honolulu are taxing but necessary. “Kwajalein has no specialists, and the hospital is quite limited. We must come to Honolulu for periodic MRIs, and to see the ophthalmologist, neurologist, neurosurgeon, physical therapist, occupational therapist, and orthopedic specialists.”
During the James family’s most recent stay last month, doctors detected a swelling in Kaylee’s brain that meant her shunt, implanted on her last trip, wasn’t preventing fluid buildup as it was supposed to. This resulted in another urgent surgery to replace the shunt. They need to get it exactly right because this drainage tube is something Kaylee will require for the rest of her life. She also must undergo continuous physical therapy to help her gain full use of her hands and legs, which were affected by the damage her brain suffered during childbirth.
A few nights after the recent procedure, Kaylee developed a fever and had to make an unscheduled trip to Kapiolani’s emergency room. Tests revealed that it wasn’t an infection from her surgery, but they administered antibiotics to be safe. Just as she always has, Kaylee rallied strongly, kicked the fever and soon was back to her happy, endearing ways. Dennis and Angie breathed a collective sigh of relief and prepared to head back home—for now.
Not yet two, Kaylee is saying her first words. “Bye–bye”, she said again and again while pushing her walker down the hall on the last day of her September stay at the Ronald McDonald House Before leaving, Angie took a moment to reflect on the whole experience. “It has been both amazing and devastating at the same time. To see our baby girl thrive despite her issues is amazing; but to see her have to face the hardships devastates us.”
She credits the Ronald McDonald House and staff for making a big difference. “The House is such a blessing,” Angie says. “Without them, I’m not sure what we would have done. It has truly become our ‘home–away–from–home’ and the staff has become part of our family. They are incredible people and the world is such a better place with people like them in it!”