5 month old admitted to hospital for chest congestion dies

[jennifer]

I had a 5 month old that had a congenital heart block (2nd to 3rd degree).  We knew this before birth and had her C-section.  At 6 days old she received a pacemaker.  Everything was going fine.  August I took her in to the family doctor for a cold.  He put her on ped. drops.  It came back in September and without seeing her he put her on another type of medicine.  Then in October it came back.  I insisted that he see her and he immediately admitted her into the county hospital.  The treatment was oxygen tent, breathing treatments, and antibiotic shots daily.  The chest X-rays showed clear lungs but, WBC was up slightly on Monday. On Wednesday the doctor came in and said she is looking good.  If she is like that tomarrow she can go home. Well, he came in and heard wheezing (none of the nurses could hear) so he ordered more tests on Thursday where the x-ray was clear again and WBC coming down. Then, she went into cardiac arrest about 1:30pm.
We spoke to our daughter's cardiologist about the events leading up to her death.  She was, to say the least, upset because the family doctor should have been consulting her to begin with.  Saying this was out of his "expertise". She requested all of our daughter's records and told us she would get back with us and go over the autopsy report and see if she can make out what has happened.  We have heard so many things such as: they should have had her hooked up to monitors knowing she has a heart condition; to the medicines could have played a role.  They had her on breathing treatments every 4 hours and one shot of antibiotic daily.  Also, there was not a crash cart on the ward nor the tube to tube her.  Then the nurse got the wrong size of tube.  They had to call a doctor from our clinic to come over when she went into arrest.  The thing that gets us the most is about an hour before she quit breathing my husband made comments to the nurse about the lips looking blue then under her fingernails (we learned alot when she was 1st born from the children's hospital).  The nurse came into look at her without turning the lights on (just light from other bed) plus she was in the oxygen tent.  Then, 15 minutes before she quit breathing totally, the nurse brought in a new oxygen meter where it read the oxygen at 48 and HR at 125 - 123 but, said that this must not be reading right.  It was a new monitor and they weren't quite sure if it was reading right.  She never did get another one to check it.
The death certificate said cardiac arrest and massive cardiomegaly.  We knew her heart was enlarged at birth...that is what caused the heart block.  (I have lupus and was not informed that the Congenital Heart Block can occur in pregnancies.) But, from what we read some medicines can aggravate the heart enough.
Can you shed some light on this for us?  Are what we are hearing about the medicines true?  Thank You!

[Cleveland Clinic, MD]

My heartfelt condolences to you.  I am sure you are devastated by all these events and going through a very difficult time right now.  I can't really comment on the case although it sounds like your daughter's cardiologist is investigating and will hopefully find some answers for you.