His Heart Story
Matthew William Matthies was born on Thanksgiving Day, November 25, 2004 at 5:21 p.m. and weighed 6lbs 7 0z. The day after his birth we were advised he had a slight heart murmur that was most likely innocent and not a concern.
After two pediatric visits and a murmur that “supposedly” went away and came back his pediatrician decided we should take Matthew to a cardiologist to be further evaluated.
On February 4, 2005 we visited a well know cardiologist in central New Jersey. On that day our whole world came crashing down. After Matthew was examined we were told by the doctor that he was a very sick baby and we must get him to Children’s Hospital in Philadelphia that same day. Needless to say, we were in shock and kept asking “what does Matthew have” and all the doctor could say was he was a very sick little boy and nothing else.
With that we ran home, gathered some things together and immediately took him to CHOP. When we arrived at the hospital he was given a follow up ECHO, EKG, some blood tests and they decided to keep him over the weekend. A cardiac catheterization was scheduled for Monday, February 7, 2005 to determine the extent of the problem.
After his catheterization, we were give the very grim news that Matthew had serious Aortic and Pulmonary Stenosis and that he would require heart bypass surgery right away to correct the problem. We were also told he had the same Congenital Heart Defect as children with William Syndrome. After many visits and tests by genetic doctors they ruled out Williams Syndrome, but we were advised Matthew had the same CHD characteristics as Williams Syndrome children.
Matthew had his bypass surgery on February 9, 2005. It was ruled a success based on what they saw before surgery and after surgery and they were able to do more for him than originally though. He healed so well that he was released right from ICU on February 13, 2005.
Matthew William is a fighter and he recovered fast. When he was born he showed no signs of having a CHD. He was eating, growing and seemed very healthy.
At 14-months old, while still growing and doing well, he was sent back to CHOP in Philly to have another catheterization. During this procedure they took many pictures and tests. They were able to see that the aortic stenosis surgical site was doing very well and it was open and looked great. They did however need to perform some balloon dilation on the right pulmonary arteries. The goal of this was to open up the arteries so as to relieve some excess pressure in his heart. Again, he did excellent in surgery and was released the next day.
After some follow up ECHOS and EKGS it was determined by Matthew’s new Cardiologist and CHOP doctors that he should return to CHOP once again but this time to have the left pulmonary arteries dilated.
At 20 months on July 25, 2006 he was admitted to CHOP for his left pulmonary artery catheterization. The doctors also checked his right side. We were told that the right side was severely stenotic and there was no change from the last visit. While we were very disappointed, we were happy to see it had not gotten worse. Hopefully with time it will grow with him. The left side was dilated and the doctor was very happy with how it went.
When the surgery was finished, we were told that this current course of action (catheterizations) should continue every 6 to7 months (January/July).
Matthew was home the next day again, and showing no signs of any issues, was running and jumping and per his doctors, had the vocabulary of a 2 ½ year old.
At 26 months (February 6, 2007) he was admitted to CHOP to check and possibly dilate both sides. Prior to that a Lung Perfusion Test was performed and it was determined it would be best not to dilate at this time. His lung capacity had improved but the pulmonary branches were still narrow. We were told since he was not in any immediate danger he could return to CHOP in one year rather than the six month intervals as we were previously told. The doctors at Philly are hoping that as he continues to grow his pulmonary branches begin to grow with him.
At 3 years old (February 26, 2008) he was admitted to CHOP again to check and possibly dilate his pulmonary branches. He had many tests including another Lung Perfusion that showed there was still work to do. The doctor performed extensive dilation of the right and left pulmonary branches. It was determined beforehand that the left side of Matthew’s lungs was slightly better this time around. The right side which had the most issues was no better, but no worse. Matthew did excellent during the procedure and was discharged to be seen in 6 months by his local cardiologist and a definite return visit to CHOP in one year.
At 4 years old (January 13, 2009) he was admitted to CHOP again to possibly dilate his pulmonary branches. After going in and taking measurements and pictures during the catheterization, the doctors determined that the best course of action would be to not perform any dilation during this visit. The previous catheterizations were moderately successful, but any further dilation could in fact do more harm than good this time. We followed up a few weeks later with his cardiologist, and she advised along with Dr Gillespie’s recommendations that they wanted to wait another 2-3 years before doing another catheterization. They are hoping that some more time will allow the pulmonary arteries to grow a bit on their own. This was great news as the frequent visits to CHOP were growing harder and harder each time, as now that he is older and more aware he has become a little more afraid of the tests.
Jennifer and I are surrounded by great family and friends whose support is priceless to us. Matthew is so well loved and every day is a new joy with our little miracle boy.
He is our little angel and would not trade him for anything in the world.