So many questions

I often read about other babies with the same or similar heart defects as what Gabby had. And more and more often, I am seeing some major differences in the way their care is handled as compared to how Gabby's was handled. It is so hard to find out so much is being done for those babies that was never done for Gabby. They had testing that she never had, testing that gives the doctors a better idea of how their lungs are doing and helps them decide whether or not the baby can safely have surgery. Gabby didn't have those tests and her lungs were the cause of her death. They were in HORRIBLE shape, and nobody knew???? That just doesn't make any sense to me.

I recently talked with one mother who has a young infant with Down syndrome and the same heart issues Gabby had. Since the little boy has developed pulmonary hypertension (as Gabby did), the doctors are going to do a heart cath to determine the exact pressures in his lungs. They will then decide if his pulmonary hypertension needs more aggressive treatment so that he can go into surgery with a lesser case of it and a greater chance for a complication-free surgery. Gabby's doctors knew she had pulmonary hypertension. Yet, nothing was ever mentioned about a heart cath or waiting to get her pulmonary hypertension under control before surgery. Many babies with Gabby's same health issues are also put on a feeding tube in order to help them gain weight faster and overcome the feeding obstacles that go along with Down syndrome and heart defects. Not only did Gabby have those feeding obstacles, she also had a submucous cleft palate. That made it even harder for her to eat. There were weeks when she lost weight (totally NOT okay for a young infant). And some weeks, she gained only 1-2 oz in the entire week (rather than the typical 1 oz per DAY that babies that age should gain). Multiple times, I asked the docs if a feeding tube would be a good idea. Multiple times, I was told Gabby did not need it. So it is hard when I see that other babies ARE getting feeding tubes, even babies who are larger and gaining weight faster than Gabby did. Why are those babies getting the tubes? According to their mothers, the doctors want them to gain weight at a typical rate so they can be ready for their open-heart surgery BEFORE pulmonary hypertension develops. WHY didn't Gabby get a tube? She was only 6 lbs at birth and had only reached 8 lbs 6oz by 4 months of age. That is NOT an acceptable weight gain for an infant! So why were we told over and over that she didn't need a feeding tube? Again, it makes no sense.

I could go on and on about this topic, but I won't. I'll just say that I am continually upset by the care that Gabby was not given. I am certainly no doctor, but I can compare apples with apples and easily notice when one apple doesn't look the same. Please pray for me as I struggle to understand this and figure out how to deal with this information. Losing a child is hard enough, but finding out that their death may have been the result of someone's mistakes just adds a whole new level to the pain.