My daughter Jenna was born Remembrance Day 1998, her mother, a First Nations woman must have had great courage to know her child's needs would be best taken care of with someone else. Jenna was born FAE, though it has not been proven NAS, as this would require testing and you'll see why I hesitate. Having worked many years for Specialists in the medical field I am convinced Jenna went through withdrawal at 3 weeks old. On top of that chicken pox too!
Upon her first visit to the Paediatrician at two days old, he tried to convince me that the diaper rash would go away with creams. I dropped him like a hot potato when I realized it was thrush and he hadn't a clue! I realized then, how helpless she was and I would be the one to advocate for her. I filed for adoption.
I took Jenna to my G.P (Bless her), and along with being diagnosed with thrush, I was told of her heart murmur and consequently sent to Children's hospital to see a Cardiologist. Jenna was diagnosed with a VSD Ventricular septal defect; a hole in her heart.
Many people I spoke with knew or had themselves experienced holes in the heart, and apparently out grow them or live perfectly normal lives with small holes! Unfortunately, Jenna's hole was large and would require an open-heart operation. As devastating as this was, the procedure was relatively minor compared to some heart operations. Yes, the child goes under anesthetic, yes, the ribs are broken and separated to gain access to the heart and yes, the heart is stopped while the repair is made. The Surgeon assured us that the procedure would take @ 4 hours then she'd be in recovery in ICU and home in 3 to 5 days! The operation took place May 11th 1999. She was 6 months old.
After 5 days in ICU (Intensive Care Unit), Jenna's health deteriorated, on top of the UTI (urinary tract infection) she experienced fluid on the lungs and severe heart failure. The diagnoses was the patch for the hole may be too big and rubbing against the mitral valve or the heart had swollen to an absurd size and sending her into failure. Thank God, she was only 6 months old. Fluids were withheld, blood tests given every hour to check for gases in the blood, catheter was installed and a tube inserted into her lung to drain excess fluid!
My other two children came to visit Jenna and me in the hospital, they saw the tubes, the machines and the smells associated with ICU and my eldest son asked that he not return. It was too much for any 11 year old to take. My 9 year old daughter, read stories and sung to Jenna though most of the time she was unconscious due to the fact they had to paralyze her to stop from moving or removing the tubes.
After about 28 days; Jenna was sent home still in heart failure, but manageable. We returned to Children's every few days with fevers, or vomiting or unmanageable pain and crying outbursts. This was June 1999.
By November she had been in and out of Children's two dozen times! Then the cardiologist discovered that the prognosis given had been errant. Jenna was either suffering from pulmonary hypertension or Pulmonary vein stenosis. Both equally fatal.
Jenna was diagnosed November 1999 with pulmonary vein stenosis using heart catherization (small camera inserted into femoral vein to the heart). It was discovered that of the four pulmonary veins we all have, 3 of Jenna's were stenosing (closing up). The two left ones had become too narrow to allow for oxygen exchange to the lungs. In February 2000, she had her second open-heart operation. This time, the surgeons felt if she did not have some procedure done, she would expire quickly. Children with pulmonary vein stenosis in one vein can live quite normally. With 2 veins, it increased mortality. Jenna had 3 veins stenosed and her chances and her health was deteriorating quickly. The alternative would be a double lung and heart transplant done in Philadelphia.
Since we did not know how long it would be before those organs would become available, we chose the experimental surgery. It took 11 and a half hours as Jenna would not be easily resuscitated and the bleeding to the heart could not be stopped. Each time the surgeons re-started the heart, that meant warming the blood, pumping it back into the body, she would go in to cardiac arrest. Each time this occurred the surgeon requested I call family members to say goodbye to her; each time I'd tell him to haul his butt back in there and fix her up so I could take her home! I wasn't about to lose another child to the hospital.
We brought Jenna home at the beginning of March 2000. Her future is uncertain. She has a speech delay, she is FAE (diagnosed at Children's Hospital), she has developmental delays (due to anesthetic? alcohol? drugs? ) She uses a mobility chair when she tires, and upon starting Kindergarten this year will have the chair in her classroom.
I am more frightened now of her starting in to the school system, with all the cutbacks and services being discarded, than I ever was of her going through her surgeries! Please be sure to add this to the board for other parents to share.
Yours,
Angela MacDonald,
Mom to Nathan 12, Rachel 9, Jenna 4,
VSD repair 1998; Pulmonary vein stenosis x3, repair of 2 (L) veins 1999. Pulmonary hypertension (R) lung.
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