I am searching for answers to maybe gain some sort of rest or closure, however reading the question posted from Sarah, I am more lost than before.
My first daughter was born Jan. 8th, 2008 with TOF w/ absent PV. She was 6 pounds at birth. There were no prior indications that there was trouble ahead for her. After birth she went into sever respiratory distress. 5 hours later I was told of her heart condition. The following day after genetic testing was done, we were told she had 22q11 deletion, an absent Thymus and DiGeorge Syndrome. She looked perfect! She was sent to Atlanta within a few days and the drs. were excited about her size and spoke positively about her getting a surgery. Her oxygen saturation was never good and was always on 100% oxygen. Each time they tried to wean her, she would go into distress.
I guess my question is this, could it be that her saturation levels were too low for surgery? I have since thought that maybe if they had went ahead with surgery, maybe that would have changed. So what stopped them? What would be the requirements to go ahead with that type of surgery? Her weight maybe?
At 22 days old I was informed she had gram-neg septis. The Dr. said they could keep her on a vent as long as we wanted, but that was all it would be. She developed a brain bleed, sever edema, and was placed on an adult sized oscilator. Feb. 1, 2008 we had to let her go.
I guess I am a grieving mother searching for answers. Please understand that I in no way what so ever hold the Doctors responsible. I believe all things happen for a purpose and that if she was meant to live, she would have. But sometimes an answer is nice to have when there is nothing else to hold on to.
I am sorry to hear that your daughter passed away. Unfortunately, as you might imagine, this is not the forum to get the answers that you seek. Tetralogy of fallot with absent pulmonary valve leaflets is a complex disorder, often associated with serious airway abnormalities, and the need for chronic ventilatory support in some cases. The added issue of DiGeorge syndrome further complicates the situation. As far as answers to WHY surgery was not performed, I cannot say. That can only be answered by her caretakers. I do not know if there were any contraindications to performing surgery. Patients with this condition often need neo-natal surgery, and usually if they are over 4 pounds, some cardiac intervention can be performed. Sometimes they need to be trached and place on chronic ventilation while recuperating from surgery and they get stronger. Unfortunately, even babies who undergo successful surgery can have serious or deadly complications from infections that occur in the perioperative period. I strongly suggest that if you still have questions and issues related to your daughter, then you should contact her doctors, request a meeting, and work through them.
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