The Plan:
The plan for baby P after birth is to place him in NICU and begin an IV line of prostaglandins to keep the PDA open and his heart functioning. Basically, we are all born with a Patent Ductus Artery (PDA) attached to our heart...it is a normal fetal blood vessel that closes shortly after birth and begins the normal blood flow through the heart, to the lungs, back to heart, and to the rest of the body. Due to the anatomy of baby P's heart, if this were to close he would suffocate as no blood would reach his lungs, therefore they must keep this artery open by administering the prostaglandins. They will then perform another ECHO to confirm his diagnosis (diagnoses often change after birth), wait a week for baby to acclimate to the world, then surgically place a BT shunt, or artificial Goretex tube, in the PDA to keep it open permanently. He will recover for 1-2 additional weeks in the CICU/NICU and then come home. We will then wait 4-8 months for baby to grow before beginning the major surgery(ies) to "fix" the issues...
As of right now we have two options to fix the heart:
1) Create a normal flow of blood through the heart by moving the major arteries to their correct positions and closing the VSD to maintain a 4 chambered heart. This is the preferred first choice as it creates a normal heart that will function near full capacity. It also should only be one open heart procedure barring any complications. The only problem with this option right now is that it may not be possible due to how far to the right the aorta is currently from the left ventricle where it belongs. They will be monitoring this as he grows and doing measurements to see if it is a feasible option. Otherwise, option two.
2) Create a single ventricle pathway using the Bidirectional Glenn procedure around 10 months of age and the Fontan procedure at 3-4 years of age. Timing of these interventions all depend on his growth...as soon as he stops growing, that is a signal that his body is nearing the max size for his heart to support and surgery is needed before any damage is caused.
Prognosis:
This information is very difficult to find. Based on reputable sources online, the prognosis depends on the defect, however most children end up leading normal lives. Mortality rate also depends on the complexity of the heart defects and if other health or physical issues are present in a patient, ranging anywhere from 5-60%. Luckily, Baby P's defects are limited to his heart and no other defects have been suspected or confirmed. According to our Pediatric Cardiologist, despite the complexity of Baby P's heart defects she is optimistic that so long as he is healthy enough at birth and tolerates the surgeries well, he will have a normal life with very few limitations. He won't be a weightlifter or track athlete, but he can most certainly participate in and even excel in most sports if that ends up being his thing! Talk about motivation to remain positive, keep stress levels low, and keep him cooking as long as possible!!
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