The day following his birth our Pediatrician came to examine him and said that she heard a murmur. She said not to be too concerned for it wasn't unusual for babies to have murmurs when first born. It was probably the ductus that hadn't closed yet and more than likely it would close in the next day or so. We were extremely concerned but told ourselves that it would be okay. Day 3 another Ped from the office came to check on Liam and said he couldn't hear the murmur so the ductus must have closed. We breathed a huge sigh of relief. Day 4 another Ped came in and said that she still heard the murmur. Once again, worry set in. We were released from the hospital and went home that day.
Day 5 we took our little precious boy to the Ped because he had some jaundice. This was our original ped who had caught the murmur. She said that she still heard it and wanted us to see a specialist that day. We took Liam to a pediatric cardiologist who examined him and asked us to return on Monday for an echocardiogram.At first they thought that Liam had a condition known as Tetralogy of Fallot and told us that if the ductus closed, he could die. We immediately went from the PC's office back to the hospital and admitted Liam. The following day another echo was done at the hospital and we were now told that Liam's heart defect was Truncus Arteriosus Type IV. We were told that he was inoperable and would have to have a heart/lung transplant someday. We were devastated, to say the least. They released us from the hospital and told us to go home and enjoy our baby. It felt like my insides were being ripped out yet they were telling me to go home and enjoy him. Stunned, we took Liam home not knowing how long we had with our precious baby.
We decided to get another opinion and took his records and echo to UCLA for Dr. Hillel Laks to evaluate. UCLA recommended that Liam have a heart catheterization to determine if he was operable. Our PC was against this, for he believed that Liam had no pulmonaries and nothing would be found. This was a terrible dilemma for us. UCLA's viewpoint was - wouldn't it be a shame to find out down the road that Liam was operable but we missed the window of opportunity to operate. Against the PC's advice, we went ahead with the cath when Liam was 4 months old. We received wonderful news, Liam was operable! Now his diagnosis was Pulmonary Atresia with VSD (Ventricular Septal Defect). Needless to say, we ended up switching to another PC, the one who had done Liam's cath, Dr. David A. Ferry. He is wonderful and switching to him was one of the smartest moves we could have made.
The heart cath showed that Liam had an absent Pulmonary valve, a left pulmonary artery that was attached to the ductus which had remained open - a condition called PDA - Patent Ductus Arterious, and no true right pulmonary artery. Instead, Liam has 2 vessels called collaterals (MAPCA's - multiple aorta pulmonary collateral arterials). These vessels take the blood from the heart to the right lung. He also has a VSD-Ventricular Septal Defect, a hole between the ventricles.
Liam is an incredibly beautiful, happy baby who loves to laugh and is very affectionate. He has undergone an incredible amount in his short life and has shown us that he has an incredible will to live, must be the fighting Irish in him! He has already had 2 surgeries with which he had a very tough time. See the link below for the events of Liam's surgeries. We feel so very blessed to have this remarkable child in our lives. So many have prayed for our little guy and we are relying on more prayers to carry us through the times ahead. Liam is facing several more surgeries but his amazing resilience and spirit will see him through what's to come.
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