Natalia's Heart Surgeries
$8,624 Raised
86% of $10k goal
97 contributors
3 Years running
Natalia was born 9/4/12 with a congenial heart defect; Tri-Cuspid Atresia. She needs your help to defray the cost of the medical bills. She is a fiesty little girl, with 1 big heart. More ...
Natalia Bryn Sims
Born: September 4, 2012

Our daughter, Natalia Bryn Sims, was diagnosed as having a congenital heart defect called Tri-Cuspid Atresia during prenatal ultrasounds when I was approximately 25 weeks pregnant. Essentially, the right side of her heart is underdeveloped. The right side of the heart controls pulmonary blood flow or, blood flow to the lungs. The defect blocks blood flow from the right atrium to the right ventricle. Blood ultimately cannot enter the lungs, where it must go to pick up oxygen (become oxygenated).
Tri-Cuspid Atresia cannot be cured, but it can be treated. Natalia’s treatment requires three (3) open-heart surgeries. When Natalia was born, she was immediately taken to the neo-natal intensive care unit (NICU). The first surgery was done when she was 6 days old. The first surgery included the insertion of an artificial shunt in her heart to make sure that her heart was able to pump enough blood to her lungs and to the rest of her body. The first procedure was successful and Natalia stayed in the hospital for the first month of her life (from September 4 – October 2, 2012).
While at home, Natalia was monitored very closely, often requiring several visits to her medical team of doctors (pediatrician, pediatric cardiologist, hematologist, radiologist, etc.) every week. She was also required to receive two in-home visits per week from a home healthcare nurse. Natalia’s maintenance routine at home also required the administration of between 6-7 different medications, 2-3 times per day.

Initially, doctors believed that Natalia would be ready for her second surgery during the second week of March, 2013. However, after a routine ultrasound on December 26th, doctors determined that Natalia was immediately ready for her next surgery. On December 31, 2012, Natalia had her second surgery to insert a Glenn shunt into her heart. This procedure connected half of the veins carrying blue blood from the upper half of the body directly to the pulmonary artery. The surgery was successful. While recovery from this surgery typically requires a week-long stay in the hospital, Natalia has now been in the hospital three weeks. While her heart functioning is great, her recovery has been hampered by the contraction of a staph infection and some respiratory issues related to her treatment in the hospital.
The third and final surgery that Natalia will have to undergo is called the Fontan procedure. The rest of the veins carrying blue blood from the body are connected directly to the pulmonary artery leading to the lungs. The left ventricle will only have to pump to the body, not the lungs. This surgery will be performed when Natalia is between 18 months to 3 years old.
The effects of Natalia’s heart condition on our family and way of life have been tremendous. Due to Natalia’s illness, I was unable to return to work after my maternity leave and had to resign. The loss of my income has been difficult and has forced us to reevaluate our lifestyle and finances and make cuts to both such as reducing our older daughter from full-time to part-time preschool and reducing the kids’ extracurricular activities. My mother has temporarily moved from Michigan to our house to care for our other two children and to help maintain our household while we focus on Natalia’s health. Natalia’s daily medical care responsibilities are rigorous and require a lot of time, energy, and expense.

Medication Administration
Natalia requires constant care, including the administration of up to 7 medications 2-3 times per day at specific times during the day. At one point, this included the administration of a shot, twice a day. A side effect of Natalia’s heart defect is constant vomiting. Because of her vomiting, it usually takes roughly two hours to administer her required medication (which consists of holding her upright and giving her oral medications very slowly) to ensure that she does not vomit her medication.

Doctor’s Visits and In-home Care
Natalia requires ongoing monitoring by her medical care team, which typically includes a weekly visit to her pediatrician, a visit to her pediatric cardiologist every two weeks, and two in-home nursing visits per week.

Natalia’s illness has had a tremendous impact on our family’s finances since before she was born. By the end of her third surgery, out of pocket expenses are expected to be north of $25,000.
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