Gemma Williams and Jason Thomas lost their three-month-old daughter, Lexi, to a heart condition.
The couple is now working to get all newborns tested for heart conditions to prevent this tragedy from happening to another family.
The couple had gone shopping with their daughter when she became unresponsive.
A good Samaritan who had medical training tried to resuscitate her, while 911 was called.
Lexi had a rare illness called total anomalous pulmonary venous drainage, so very little oxygenated air was circulating in her body.
Williams and Thomas say that a simple test called the “pulse oximetry” test could detect this problem early.
The test would quickly measure the level of oxygen in the blood and is usually a device that goes over your finger, in the case of infants, it can be attached to their toe.
According to medlineplus.gov, a newborn may not exhibit any symptoms of this illness.
Symptoms include lethargy, poor feeding, rapid breathing, and a bluish skin color.
The condition is deadly if not caught early – but it is treatable with surgery.
Ultimately, without treatment, the person’s heart will enlarge, and that leads to heart failure.
If the defect is fixed early, infants have an excellent prognosis.
Williams has created a petition on Change.org that would require the test for all newborns.
The problem, according to Williams, is that the health boards are not willing to spend extra money to run this life-saving test.
Williams and Thomas had a healthy baby, named Oliver since they lost Lexi and he is now five months old.
Share away, people.