Matthew's Story

I would like to tell you about my son, Matthew who is 2 years old and was born with a congenital heart defect.

Matthew William Matthies was born on November 25, 2004. He weighed 6 lbs 7 ounces and was 19 inches long. We were told by the nurses and his pediatrician at the time that he was born with a heart murmur which was probably an innocent one and that he would grow out of it. At his follow up visit 3 days later with the pediatrician, we were told the murmur was gone. Then at his 2 week visit we were told it was back. Then only at his 1 month visit were we told by Matthew's doctor that we should see a cardiologist for an evaluation which was no rush because the appointment we were given was approximately 3 weeks later.

Matthew On February 4, 2005 our world came crashing down. What my husband and I thought would be a routine visit became our worst nightmare. We were told by the cardiologist that Matthew was a very sick boy and that we would have to bring him to Children's Hospital of Philadelphia by 3:00 p.m. that day. When we asked what was wrong with Matthew all she could say was that he was very sick and needed to get to the Children’s Hospital in Philadelphia (CHOP) by 3:00 pm because he was so sick. With that my husband and I, along with my mother, drove Matthew to CHOP. We had to have him there by 3:00 p.m. because they needed to do more tests on him and they left for the day at 5:00 p.m.

Upon arrival at CHOP, Matthew was checked in to 6 West of the Pediatric Cardiac Unit. He underwent another echocardiogram and EKG. We were told by Dr. Paul Weinberg that Matthew has aortic stenosis and pulmonary stenosis. The definition of aortic stenosis refers to a condition that causes obstruction to blood flow between the left ventricle and the aorta. There are a variety of causes, including muscular obstruction below the aortic valve, obstruction at the valve itself, or aortic narrowing immediately above the valve. While pulmonary stenosis refers to the narrowing of the pulmonary valve, valvar pulmonary stenosis causes the right ventricle to pump harder to get blood past the blockage. Matthew's case was critical as his condition was severe. They also told us they may not be able to patch the pulmonary arteries because they were so small. His heart was becoming enlarged from all of the extra work his arteries were doing.

Matthew was scheduled for a catheterization on Monday, February 7, 2005, during which he had trouble with the anesthesia as his heart rate dropped because they were not sure how much to give him. We were told after his catheterization that his condition was severe and that he needed bypass surgery to try to correct his condition as soon as possible. We were given the news that he may not make it through the operation. He was in the Pediatric Intensive Care Unit after his catheterization and was given a bed in that area because we could see him any time we wanted. When we awoke the following morning he was moved back to the Pediatric Cardiac Unit because he was so loud he was disturbing the other babies and he didn't belong in intensive care because he was too happy.

Matthew's open heart surgery was scheduled for Ash Wednesday, February 9, 2005. We met with his surgeon that morning, Dr. Thomas Spray, who advised my husband and me that what they were dealing with was very delicate and that Matthew may not make it through this operation. The operation was to take 2 hours. They were 2 of the most agonizing hours of not only our lives, but our families. When Dr. Spray came out to speak to us he had a smile on his face. He told us that Matthew did extremely well and that they were able to correct and patch more than they thought including his pulmonary arteries. Matthew was 11 weeks old at the time.

When Matthew awoke in the PICU, even though he was on morphine and just had open heart surgery he had a smile on his face. We were told that he would be in intensive care for 3 to 5 days and another week back in the Pediatric Care Unit. During his stay in PICU he was a trooper. He never cried unless he was hungry and all of the nurses were fighting over him because he was one of the bigger babies there. Well, since Matthew is a fighter, he was released from PICU on that Sunday, February 13, 2005, without going back to the other side. He had recovered so fast that he was strong enough to go home. He was only on 2 medications for about 2 weeks. He had a follow-up visit 2 weeks later at CHOP and Dr. Weinberg was impressed with what Dr. Spray had done. Every person at Children's Hospital of Philadelphia was kind and caring. Everyone of them had a smile on their face and helped us tremendously.

Matthew can now see his own cardiologist here in New Jersey. My husband and I lived in Howell at the time of this, but have since moved back to Middletown where I grew up.

We got rid of the pediatrician who let his condition slide and the cardiologist who was so rude and insensitive during this time.

Matthew's new pediatrician, Dr. Steven Miller of Navesink Pediatrics and his cardiologist Dr. Mitchel Alpert are two of the most kind and wonderful doctors around. He is now seeing a new cardiologist in Dr. Alpert’s office; Dr. Elsa Castro who specializes in sedated ECHOs and has seen Matthew at his last few visits.

Dr. Alpert has since told us that Matthew's murmur was so loud it never would have gone away and that it should have been addressed at birth. If we had not gone to the first cardiologist for an evaluation, Matthew would have died because of this condition.

Babies born with AS and PS usually show signs of their condition by not eating and not thriving. They also have cold extremities and sweat a lot. Matthew seemed healthy and was eating and gaining weight. I had questioned that his hands and feet were cold, but was told by the pediatrician that infants have colder extremities and that it was also winter. He did sweat a little, but I thought he was just a sweaty baby.

Matthew could have well lived with his CHD for years and suddenly, like a lot of athletes do, died suddenly. His condition is not detectable without echocardiograms and EKG's.

Matthew William is our little miracle baby. Someone was looking out for him during all of this. For what he has gone through in the short time he has been with us, he is always a joy and is such a pleasant boy. After seeing an 11-week-old baby go through open heart surgery, I swore I would never complain of stupid aches and pains again.

Matthew has had another procedure. At 13 months he was re-admitted (day stay) to Children’s Hospital due to some strange readings at his last ECHO visit. He was admitted to have another catheterization of his heart. The doctors went in and saw that the pressures were higher than normal, so while inside the cath doctor performed a balloon angioplasty in the pulmonary arteries to try and relieve some of the pressures. If the pressures stay high, the heart will begin to strain harder than it needs to, so this was very necessary. He also had a second catheterization in July of 2006, and he will need to go back in January 2007, to see if they can do another cath or just monitor him as he grows.

He will need periodic monitoring by his heart specialist and probably more visits to CHOP, but we feel he is receiving the best care in the world and will do what needs to be done to help him try to lead a normal and healthy life.

This has been the worst thing that has happened to my husband and me in our entire lives. We just take everything one day at a time and enjoy Matthew for the loving wonderful baby that he is.