Congenital Heart Disease Support Group
Congenital heart disease is heart disease in the newborn, and includes congenital heart defects, congenital arrythmias, cardiomyopathies, and hypertrophic cardiomyopathy (HCM). CHD can describe a wide variety of different abnormalities affecting the heart. CHD occurs when the heart or blood vessels near the heart does not develop properly before birth.
My second daughter Katharine was born on September 7th, 2010. She was delivered perfectly healthy, or so we thought. When we brought her home she was such an easy baby. All she did was eat and sleep. She hardly even made a sound.
I came home from work one day and she looked like she was breathing kind of fast. She was almost three weeks old at the time. I mentioned it to my wife and she called the pediatrician. It was after hours so she left a message with the answering service. While we waited for the doctor to call back I went on the internet. I looked up what her breathing rate should be. It said that a normal adult breathes about 15 to 20 times a minute and an infant breathes about 40 to 60. That made me feel better but I decided to set a timer and count her breaths. She was at 90 breathes a minute. I now started to get scared again. We bundled her up to take her to the ER. On the way down there the doctor called us back. He told us we were doing the right thing and that it was probably just a chest cold or something.
When we got to the ER, Katharine was really starting to struggle to breath. The triage nurse took one look at her and rushed us right in. For the next few hours it was test after test while Katharine was getting worse and worse. The doctors just couldnt figure out what was wrong with her and she started to crash. The doctors were able to stabilize her with drugs and oxygen but she was still fading. We thought we were going to lose her.
A nurse came in to check on her and got a concerned look on her face when she listened to her heart. She quickly left and came back with a doctor. The nurse heard a slight murmur that no one else had picked up on. They called for an echocardiogram right away.
After a little while we were called into an office. We were introduced to a cardiologist, a surgeon and a social worker. As soon as the social worker introduced herself my wife started crying. I felt numb. Like it wasnt real. It felt like I was watching a movie. They told us Katharines aorta was shrinking. Its called a coarctation of the aorta. I dont know if I spelled that right. She was down below 10% blood flow from the armpits down and her heart was extremely enlarged. Thats why her organs were shutting down. The doctors were able to put her on drugs to thin her blood, stop her aorta from shrinking and relax her heart.
Katharine was baptized in the NICU. The priest went through the right of baptism and started to read Katharine her last rights. Thats when I started to cry for the first time. I just couldnt hold it anymore.
The next day she was given a blood transfusion and had surgery to repair her aorta. The doctor said that her heart stopped for a little while and they had to shock her. But other than that the surgery was a success. They went in from her back. They went right between her ribs and moved her lung out of the way to get to her heart. That way they didnt have to cut any bones.
Katharine woke up the next day. The doctors tried to see if she would take a bottle and she gobbled it down! They asked my wife if she wanted to try to breast feed her. Katharine latched right on and went to town. (And shes still a little piggy to this day.) Katharine was able to come home after only 3 days in the NICU after surgery. The doctors told us that she might need another surgery later in life from the scar tissue on her aorta. But that it would be pretty minor. She had been doing great ever since. She still has a slight murmur, but the doctors expect it to go away as she gets older.
The staff at the hospital told us what a good job we did in noticing something wasnt right and getting her in right away. They told us that it usually comes on so fast that most babies crash before parents even know something is wrong. It was amazing how fast she went downhill. If we had decided to wait until morning to take her in, she would have died that night. My sister always gave me a hard time about keeping my kids in a bubble. She told me she will never tease me about that one again.
I cant thank the staff at Rady Childrens Hospital enough. They save our Katharines life. Now she over a year old and walking, talking and doing great. I still find it hard to talk about. I dont want anybody to see me tear up.
I came home from work one day and she looked like she was breathing kind of fast. She was almost three weeks old at the time. I mentioned it to my wife and she called the pediatrician. It was after hours so she left a message with the answering service. While we waited for the doctor to call back I went on the internet. I looked up what her breathing rate should be. It said that a normal adult breathes about 15 to 20 times a minute and an infant breathes about 40 to 60. That made me feel better but I decided to set a timer and count her breaths. She was at 90 breathes a minute. I now started to get scared again. We bundled her up to take her to the ER. On the way down there the doctor called us back. He told us we were doing the right thing and that it was probably just a chest cold or something.
When we got to the ER, Katharine was really starting to struggle to breath. The triage nurse took one look at her and rushed us right in. For the next few hours it was test after test while Katharine was getting worse and worse. The doctors just couldnt figure out what was wrong with her and she started to crash. The doctors were able to stabilize her with drugs and oxygen but she was still fading. We thought we were going to lose her.
A nurse came in to check on her and got a concerned look on her face when she listened to her heart. She quickly left and came back with a doctor. The nurse heard a slight murmur that no one else had picked up on. They called for an echocardiogram right away.
After a little while we were called into an office. We were introduced to a cardiologist, a surgeon and a social worker. As soon as the social worker introduced herself my wife started crying. I felt numb. Like it wasnt real. It felt like I was watching a movie. They told us Katharines aorta was shrinking. Its called a coarctation of the aorta. I dont know if I spelled that right. She was down below 10% blood flow from the armpits down and her heart was extremely enlarged. Thats why her organs were shutting down. The doctors were able to put her on drugs to thin her blood, stop her aorta from shrinking and relax her heart.
Katharine was baptized in the NICU. The priest went through the right of baptism and started to read Katharine her last rights. Thats when I started to cry for the first time. I just couldnt hold it anymore.
The next day she was given a blood transfusion and had surgery to repair her aorta. The doctor said that her heart stopped for a little while and they had to shock her. But other than that the surgery was a success. They went in from her back. They went right between her ribs and moved her lung out of the way to get to her heart. That way they didnt have to cut any bones.
Katharine woke up the next day. The doctors tried to see if she would take a bottle and she gobbled it down! They asked my wife if she wanted to try to breast feed her. Katharine latched right on and went to town. (And shes still a little piggy to this day.) Katharine was able to come home after only 3 days in the NICU after surgery. The doctors told us that she might need another surgery later in life from the scar tissue on her aorta. But that it would be pretty minor. She had been doing great ever since. She still has a slight murmur, but the doctors expect it to go away as she gets older.
The staff at the hospital told us what a good job we did in noticing something wasnt right and getting her in right away. They told us that it usually comes on so fast that most babies crash before parents even know something is wrong. It was amazing how fast she went downhill. If we had decided to wait until morning to take her in, she would have died that night. My sister always gave me a hard time about keeping my kids in a bubble. She told me she will never tease me about that one again.
I cant thank the staff at Rady Childrens Hospital enough. They save our Katharines life. Now she over a year old and walking, talking and doing great. I still find it hard to talk about. I dont want anybody to see me tear up.
Cute, huh? :)
PS She is gorgeous
God bless babies.
God bless parents.
God bless doctors.
My son (my second child) was born with Transposition of the Great Arteries. He stopped breathing about a minute after he was born and his skin was so blue. We had a much rougher stay in the hospital. He had open heart surgery when he was 14 days old, which was thought to have gone really well. Within an hour of his surgery, he had a bleed in his heart, and started bleeding out, needed blood transfusions, had to have life saving drugs administered twice as well as open chest cardiac massage to stabilize him so he could even make it back down to the OR. They fixed the bleed, but because it was emergency surgery, they were not able to be as careful - they were just trying to save his life. He had many complications because of the second surgery, and it took weeks for him to recover. I walked in the PICU one day to find the doctor doing an ultrasound on his brain - they were worried that because he died twice that night, he may have some brain damage.
He finally came home when he was 3 months old. He had to be tube fed, we had oxygen tanks everywhere, and he was slowly weaning off of methadone for the pain.
Dale is now 8 years old. He is in the top of his class in school, and has not had to have another heart procedure (other than a cath and and 2 MRI's). He sees the cardiologist about once a year, and they tell us each time that there is no change. These are the best words for us to hear.
Sometimes, I can't believe that it was 8 years ago that my life changed so much. Sometimes it feels like it was only a few months ago, so vivid are my memories and emotions of those days. He has been such a blessing in my life, and I can't imagine my life being any different.
Your baby girl is such a cutie pie! I'm so glad that you listened to your instincts.
God bless,
Misty