Sophia Helbing's parents describe her entrance into the world as "completely terrifying, yet completely lucky." Both Sophia and her mom, Katie, were at risk of losing their lives if she wasn't delivered immediately due to placental abruption. Six-and-a-half weeks early, Katie and Jeff met their little girl.
Just 36 hours after birth, doctors discovered Sophia had major structural defects of the heart, requiring her to be transferred via air ambulance to Iowa City. If the medical team had not heard a murmur, Sophia's patent ductile artery (PDA) would close, which would have stopped blood from going to the rest of her body. Before birth, the PDA closes naturally in utero, but if Katie's pregnancy had gone full-term, Sophia would not have made it.
"From the moment she was born, Sophia has fought to be here in the face of so many obstacles," said Katie.
Sophia had her first open-heart surgery at 9-weeks-old. At 5-months-old, Sophia underwent another open-heart surgery, which would lead to more surgeries in the future.
"As a family, we have had to pick up and essentially move multiple times for the duration of Sophia's hospital stays, which have lasted over a month multiple times," said Katie. "We have had to learn how to drop everything in a blink of an eye, pack and go."
While Sophia's current care schedule is less chaotic now that she has had the feeding tube removed, she still takes medication twice daily, and her blood pressure is monitored and recorded daily for review by her care team. Katie and Jeff also are acutely aware of signs that could mean her heart is beginning to fail.
"Having gone through so many challenges, Sophia has become curious about her diagnosis and others who are 'special' like her," said Katie. "She is empathetic to those around her and develops strong connections to those she interacts with."
One person in particular with whom Sophia has bonded is her little brother. Due to Sophia's heart issue, Katie and Jeff had to have a Level 2 ultrasound performed during their last pregnancy. At 20 weeks, they learned Sophia's brother had myelomeningocele spina bifida.
"Sophia has been wonderful in learning about the cares of her brother and his special needs," said Katie. "She also relishes in the responsibility of taking care of our dog and playing with him. But, most of all, Sophia loves to cuddle."
"We want our children to know how special they are to us," said Katie. "We try to enjoy every moment and do as much together as possible because we don't know what tomorrow holds for us."