This story is shared by a family whose son was born with CHD.
My son, Alec, was born 03-07-09 in Michigan. He was born at 38 weeks following a normal pregnancy. All 3 ultrasounds done during the pregnancy appeared normal. When Alec was born he was cyanotic (blue baby; he scored a "0" on his Apgar for color both times because he was blue) and was immediately given oxygen but still did not "pink up." He was taken to the other side of the room and given more oxygen. Eventually he gained a bit of color. The only time Alec was taken from my room was when he had his hearing tested and the following morning when he was circumcised. The nurses told me that he had an irregular heartbeat but that was common with newborns, that it would correct itself. Alec was born at 1:35 in the afternoon. At 7:00 pm I asked a nurse why his hands and feet were almost black (that dark of shade of blue). I naively thought they had done his hand/footprints and it was ink....the state of Michigan doesn't do newborn prints, but I didn't know that. She told me it was just because he had been so blue for so long after birth, and that by the next day they should be pink. I was released from the hospital the following day around 4 in the afternoon. From his birth the day before until that time, Alec had been awake approx. 1 hour, and not all at once..5 minutes here and there. Again, they told me newborns sleep a lot. Alec also had trouble drinking his bottle. Allegedly all of this was normal. For the next 3 weeks I brought Alec to his pediatricians office 3 times: 1) first week check up where they listened to his heart and said all was fine, 2) when I was concerned he was breathing really rapidly and his nails and mouth looked blue (this is normal the ped told me), and 3) when I noticed that he frequently was gasping for breath while sleeping. I thought maybe he had sleep apnea? Again, they said it was nothing to be concerned about.
When Alec was 3 1/2 weeks old, I was holding him in my arms at 10pm and he stopped breathing. I managed to get him breathing again. Then he stopped breathing again. It was April 1, 2009. Alec was rushed to the nearest hospital (not a pediatric hospital). They were at a loss as to what was wrong because they didn't have the proper size tools to diagnose him. They did tell me his pulse-ox was below 30% and his heart rate was all over the place. Another hospital brought their own team and ambulance and they took Alec away. Alec's heart stopped on the way to the next hospital. They got it going again in the ambulance. At that hospital, an amazing pediatric cardiologist was called in and he was the one who finally figured out what was wrong with Alec. Alec had been in congestive heart failure since birth. He had 4, yes, 4 congenital heart defects: Transposition of the Greater Arteries (the main blood vessels of the heart were switched in position), Patent Ductus Arteriosis (a major blood vessels that usually normally closes at the time of birth did not), a very large Atrial Septal defect (an opening between the 2 upper chambers of the heart) and quite severe pulmonary stenosis (narrowing of the blood vessels from the heart to the lungs). Alec was given medicine to limit his movement, intubated and over the next 12 hours we were told to say our goodbyes. They said the heart problems had just been diagnosed too late, that there was nothing they could do at this point. It was the worst 12 hours of my life.
That amazing cardiologist I mentioned? Well, he had a really good friend who was a pediatric cardiac surgeon at the University of Michigan. Our doctor called his friend whose name is Dr. Bove. Dr. Bove agreed to try to save my son's life. They sent a helicopter to pick up Alec and on April 7, 2009 Alec had open-heart surgery. Today, Alec is 2 1/2. He still has pulmonary stenosis and we are watching it. He also has cerebal palsy from the lack of oxygen, because for 3 1/2 weeks his brain was not getting the right amount of oxygen due to his heart defects. The point of this letter? The cardiologist told me, had I gone to sleep on April 1, Alec wouldn't have made it through the night.
The point of this letter? Alec was born BLUE, he had an IRREGULAR HEARTBEAT and never once was a cardiologist brought in or a pulse-ox done on him. Alec saw 2 different pediatricians in those 3 weeks and both listened to his heart (by the way, he had and has a really loud murmur) and never, not once did anyone - not a nurse, not a doctor, not a nurse assistant, not a resident etc. think to check his pulse ox. If I had gone to sleep my son would be dead. If the doctors and nurses had taken his pulse-ox that first day when he was born blue, Alec would not have cerebal palsy now.
This shouldn't happen again to any child. Pulse-ox screening was just added to routine newborn screening. It might take some time for all states to do it, but soon, most kids will be picked up early and treated early for birth defects of the heart.
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