Stefan was born August 12th, 2008. His pediatrician detected a heart murmur when he was a day old. We were not too worried about it as it is fairly common in babies. However, at his one week check up the murmur was still very evident. He was referred to a pediatric cardiologist who conducted an echo and discovered that Stefan has critical/severe pulmonary stenosis (narrowing of the pulmonary valve and right ventricle hypertrophy/build up of the heart muscle from being overworked.) We went directly to Children's Hospital of Michigan for a cardiac catheter ballooning procedure to open the up the valve.

Unfortunately, Stefan did not see improvement from this procedure and suffered a stroke in two locations of his brain as a result. MRI additionally showed that he had a brain bleed at the base of his brain. Due to this the heart surgery that he needed to repair the valve would have to wait until the bleed absorbed, as blood thinners needed for surgery would of caused great damage. Stefan’s heart was pumping in the opposite direction, so anything such as an air bubble or in Stefan’s case a tiny piece of his tricuspid valve that was dangling post cath could break off and shoot up into his brain causing additional stroke concern. We were looked at by 15 doctors rounding and told to, “Pray very hard for Stefan”. Thank God Stefan pulled though and was well enough to return home. Several months later Stefan was cleared for surgery.  Dr. Bove at the University of Michigan performed the surgery when Stefan was 3 moths old. He had ups and downs during his post op stay at U of M - coding the day after surgery, multiple drainages tubes, in and out, etc…but then he hit a stride and kept on improving. Thank God!

Stefan’s surgery completed –

• Pulmonary Valvotomy – Open-heart procedure to open the pulmonary valve. The valve is surgically opened-up by dividing its leaflets.
• Transanular Patch – Patch to open the valve leaflets which relieved the right ventricle pressure immediately.
• Ligation of PDA (patent ductus arteriosus) – Before birth, there is a natural blood vessel between the aorta and the pulmonary artery. This opening usually closes shortly after birth. A PDA ligation occurs when this opening fails to close.
• Closer of PFO (patent foramen ovale) – The foramen ovale is a small hole located in the atrial septum that is used during fetal circulation to speed up the travel of blood. Normally the PFO closes at birth when increased blood pressure on the left side of the heart forces the opening to close. But because of Stefan’s right ventricle pressures so high it did not close. If the pressure is great enough, blood may travel from the right atrium to the left atrium (opposite of ‘normal people’ like in Stefan’s case). If there is a clot or particles in the blood traveling in the right side of the heart, it can cross the PFO and travel out of the heart and to the brain (causing a stroke) -----which occurred with Stefan.

Stefan will be able to have ‘normal’ activity throughout his life. He will be monitored by yearly cardiology appointments and another open-heart surgery will be needed in the future to replace the pulmonary valve due to valve leakage. We are hopeful this will not happen until his teenage years or beyond. And by then it is our hope that they will have advanced catheter procedures to be able to perform a valvectomy via catheter. He also seems to be right on track with his cardiology follow up and developmentally (he will continue to follow up to assess stroke damage, if any though out his development). We feel truly blessed to have Stefan in our lives.

Carepage: http://www.carepages.com/carepages/stefan